Tuesday, February 15, 2011

Our Sweet Baby Girl!

From the time our baby girl was 6 months old I can remember her doing this thing with her lips and her being dazed and very tired... I never gave it much thought; I really thought it was normal. Now, as I look back I remember my mom saying to me she looks like she is tasting the air. Again, I didn't think much of it. But at the same time I didn't think it was normal either. I also, remember somewhere around 6 months she became sort of a different baby. I just thought she was developing her own personality. She continued to do the lip smacking and her lips would turn blue and it was like she couldn't breathe very well... I noticed it was getting worse, my mom and I would talk all the time about how it was weird, but in a way we never really gave it much thought. At this point my mom and I were the only ones that had ever seen Lille do this.
One night my mom and dad, my sister, and my sister's kids were over (At this time Lille was around 19 months. So, almost 11 months from the time I had ever noticed Lille's episodes.) The kids were all playing in the toy room. My dad calls me in the toy room to show me what the kids were doing... they were just being silly kids so, we are all laughing and I look down at Lille and she is smacking her lips, they turn blue, she is completely pale, & dazed. I pick her up and run to the kitchen to show my mom and sister... this by far was the worst one I had ever seen her have... it lasted a good 2 mins or longer. By this time I am kind of freaking out. We almost called 911. Lille finally came out of it (it felt like an eternity)
My sister said to me Emily... I really think that looked like a seizure, I was like whatever... A SEIZURE?!?!? She said yes I worked at a daycare and there was this little girl that had seizures like that... she said you need to take her in to get checked out... I called first thing in the morning; mind you, I completely in denial. There is NO WAY she is having seizures! I explained Lille's symptoms to her pediatrician and she tells me Emily... I really think by what you are explaining she is having seizures and I am going to referrer you to a neurologist.
We go to the neurologist and her plan of action is as follows... to make a long story short...Do a 30 min EEG, Then Video EEG monitoring which requires a stay in the hospital, MRI, and then check for acid reflux. Which in my mind these all seem backwards. Wouldn't you try the cheapest thing first... no! Not in America!

So, we do a 30 min EEG... nothing shows up. Then we do about 58 hours of EEG video monitoring... nothing again. As soon as she takes the wires off. 30 minutes later on the way down to the MRI she has a episode... at this point we just want answers and are SO frustrated, but still trusting God to heal her body! We then have to wait for the results of the MRI. It’s the waiting game. Not to mention Danny’s grandmother passes suddenly while we are going through all of this as soon as we get out of that hospital we packed up and left to New Mexico for Grandma Mary’s funeral.
I get a call Dec. 22nd 2010 from the nurse, "can you come in first thing tomorrow morning to discuss Lille's results?" she asked... my reply was can you just tell me over the phone? "No... Ma’am I am not allowed to tell you over the phone" is what she said... I knew they had found something because when she had the 30 min EEG they called to tell me everything was normal, they told me over the phone that time.
SO, MY HEART dropped! Was I prepared to hear what they would tell me?
My husband, my mom, and Lille and I :) arrive at the Doctor's office. They (mom and husband) were so positive! I just wanted to hear she is going to be okay!
Lille's Doctor is so sweet... She says I didn't want to call you in the day before Christmas Eve to give you this news, I wanted to wait until after the holidays, but I legally can't do that. Than she starts in and talks about how smart Lille is and how advanced she is for her age, she talks about how beautiful she is and how bright and funny! Which she IS ALL of those things :)
Then, the part I am dreading... Lille has an abnormality in her left temporal lobe of her brain... she continues to say how bright Lille is and how intelligent she is... And I hear nothing.... I start to cry. The Doctor tells me not to cry because it will make her cry. She said "There is no reason to cry, if I was telling you half her brain was missing then there would be a reason to cry." The Doctor then, continues to explain as much as they know for now which I feel is nothing. They think this is something Lille was born with. So we started her on Tripletail twice a day... She has been on it for about 1 week now and we have seen no seizures at this point... they will do another MRI in 3 months.
Lille's seizures: Her lips smack and turn blue, she is continually trying to swallow or trying to get air, she sometimes turns pale, she is dazed but still tries to talk (sometimes) if you talk to her but nothing she says comes out right, she has fallen over but not unconscious, she drops stuff that is in her hands. She is really dazed and tired after her seizures she always wants either mommy or daddy to hold her after one of her episodes and her speech is a little slurred after. And most of the time falls asleep.
Pray for healing for our baby girl! She is the daughter of the King!


Touch of Grace Photography said...

wow, you just had me crying sitting here reading that. I am so sorry that you are going through this. You have every reason to be optimistic. Our God is a god of mercy and miracles! He will heal her of this condition! I am praying and believing it for you guys. Love you!

Amy said...

She is so precious and such a brilliant child! I love spending time with her on sunday mornings. I know that God is amazingly awesome! We all love and appreciate your family

andrew said...

Emily, i am so sorry that you & your family have to go thru this aweful time with your sweet baby. It is very hard when you do not know what is going on. Thank goodness we have such wonderful doctors that are able to find out all the medical details of our babies. as a mother to a mother, i have asked the questions why God, why us, why our baby, how can you put them, my child thru such agony and hardache, why must they suffer. as you know GOD picks the babies for us that he knows we can take care of and be able to be the strong person they need to be with us in our path of life. special children are always given to the strong parents who are rocks for their families & God knows that you will be able to take care of these special children, with whatever needs they have. like you i am a very religious person and believe that GOD gave me my special child to guide him thru times and situations that you would never understand why you had to go thru. I know it can be very hard at times but the prayers have helped my levi to be a miracle of life with the help of medicine and prayers he would not be here today to do what is needed of him by GOD for his lifetime. Your little girl has a special place here on earth and is here by GODS will and he WILL take care of her, because GOD picked you as her parents and he knows only you could take care of her and her special needs. love ya hon, my prayers are always with you...melis

Emily and Danny said...

Amanda... Thank you girl! We appreciate that you will stand in agreement with us through this very hard and trying time.
Love you too!

YOU are too sweet girl! Because of you guys back there in childrens area. danny and I are able to be renewed at church every Sunday! Love you! Thank you for your support and prayers!

You brought me to tears! I remember your struggle with levi as a small child! And i remember the stregth you had! I feel SO blessed to have Lille and like you I do feel God gave her to me for a reason! She def is one of a kind! Thank you for your encouragement! It means the world to mean! You said the exactly right thing at the right time! I needed to hear this today!
Love you!