Updates from the past few weeks! :)

Wow! What an interesting couple of weeks we have had. I got sick....not just a cold but super sick! And in between it all we had appointments for Maelee that could not be missed.  I believe we will never walk into a doctor office and have an answer right away. We get the I think this is what it is, I want to run more tests, and the dreaded wait and see.

This past Monday Maelee had a neurology follow up and there were a few concerns to address. Overall the appointment went well and he was happy to see her cute little braces and watched her walk both with them on and off......he was very happy she had them. We discussed her therapy routine, he read updates and the plans and was happy with it all. But then the dreaded question of anything new happening? 

Over the past few months we have noticed staring episodes happening with Maelee, her teachers have alerted to to a few that have happened at school. This isn't staring like she is ignoring us, she is not "there" when it happens. You can shake her, touch her, poke her, pinch her, stand directly in front of her and NOTHING. It's like she is in another world. I have recorded a few of these episodes but they happen more frequently some days and other days I barely notice it happening, and am thankful for the days it doesn't happen at all.  I showed her doctor the videos, we talked, and then the plan came......another ambulatory EEG! He believes these could be seizures but is unsure of what type since she does weird twitching throughout the day randomly as well. We have always told him of the twitches and staring spells but every other EEG has come back normal so I just knew she wasn't having seizures.....but now I am worried. 

During this visit he said her diagnosis out loud. "Maelee having Cerebral Palsy puts her at increased risk for seizures." Hearing the diagnosis again cut like the first time. For some reason I had hoped and prayed that one day he would say he diagnosed her wrong, that she was fine, that her left side will just magically do what it is suppose to.............but that did not happen and will not happen. Maelee has CP.....and hearing it again from her neurologist broke my heart all over again. Unless your child has a disorder or any type of special need you will never understand how fast your dreams change, how fast one sentence or a few words can change your life, you will never understand the heartache us parents feel for the situation. 

Understand that CP doesn't change Maelee since we know her no different. She is exactly who she is with CP and all. We don't know what it would be like for her to use her left side at 100%, what it would be like for her to stand with a narrow base, what it would be like to go a day without her falling over he own feet, just one day where she picks her left foot up completely off the ground, and one day where we don't tell her to put her feet flat (heels down is a common conversation recently). Maelee has CP and a mess load of other things happening because of it along with some sleep disorders but that is Maelee. I just prayed that the label would disappear and she would just be told she is clumsy and right handed........but that is never going to be the case. 

So we will move forward and she will have another EEG. From there we may not have a plan and the dreaded wait and see will happen. In 6 months she may have another EEG to follow up. You see EEGs don't always show the whole picture, it's a hope you catch a seizure on it, but what if it's Maelee's good day and no episodes happen......we are back to worry and not knowing. This seems to be the routine of our life. 

I don't worry over the little things anymore about Maelee or life (life is for a whole other post). I know she will do great things in life and be amazing. But when my heart says something is not right and worry sets in it is very hard to ignore. I have left Maelee's life in God's hands along time ago. People like to say the stupid....yes STUPID comment "leave the worry to God and know he will handle it." ummmm yea I am her mother and worrying is my job! God will handle it but I will worry, I will stress, and I will bite your head off it you tell me to stop worrying. :)

So for now Maelee will continue PT, OT, ST, play therapy at school, starting Hippotherapy hopefully soon, and another EEG. She will be going to her pediatrician for a asthma consult soon....something we were warned about but the time has come where it is showing it's ugly head and so proactive we will be.  

And Maelee will continue to be the silly, crazy, fun, lovable, kind hearted, amazing little girl who we love more than life itself!!!! :)