We are still at Cleveland, and like everything else in this journey, we still don't have any answers. I'm trying really hard to not lose my mind. Someday though, when I get to heaven, God and I are having a little chat.
The hardest thing for me right now is that even at a world-renowned hospital, none of the doctors can agree or figure out what the underlying cause of Bella's delays are and why she is having these abnormalities on the EEG. The neurologist we are seeing while we are hospitalized (her admitting neurologist is not on call) does not think Bella is having seizures. (Yes, if you are confused, you should be-that's why she was admitted in the first place). Instead, he thinks she has more abnormalities on her EEG, but they aren't seizures. He is wondering if her recent illness triggered more of these abnormalities, or if it's actually the seizure medication she was on triggering it. He stopped her seizure medication, Keppra. By stopping her medication, either her EEG will get better OR she will start having actual seizures that we can see (scary).
So...we are on the 2nd day of stopping her seizure medication. So far (thank goodness) Bella has not any clinical signs that she is having a seizures. The jury is still out on whether her EEG is getting better. This morning the neurologist's words were "maybe slightly." Umm..that sounds convincing.
I'm tired. I'm tired of feeling like I need to be in 3 places at once. My boys (especially Alex) are having a really hard time. They want their mommy home, and it's hard for them to understand why we aren't. Even if they understand Bella is sick, they are only 8 and 5. It just seems unfair. I'm so tired of the EEG techs coming in and rewrapping Bella's head and reglueing her leads into her hair. It's painful for her, and uncomfortable, and I'm tired of my baby having to suffer. No child should have to go through what she's been through-especially when there are still no answers as to what is going on.
The best part? Bella is on video 24hrs/day. Which means....I am on video 24hrs/day. Lovely. I was trying to eat a sandwich the other day, and hold Bella at the same time. I may have had a slight problem holding her and getting a piece of lettuce in my mouth at the same time. 30 seconds later, a nurse knocks on the door to see if I need a napkin.
Nice. I'm fine, but THANK YOU VERY MUCH FOR NOTICING.
She still has smiles though...and we so love her smiles. They melt my heart, and for a second I can forget why we are here.
Thank you from the bottom of my heart for the emails, texts, prayers and love. You have no idea how much they mean to me.
6 comments:
Somehow I missed your previous post so didn't realize any of this was going on with Bella.
I'll be thinking of you and hoping for a speedy return home for you and Bella.
Still praying for you guys! If I can do anything for you, please let me know. :)
AND WHAT??? You know Keetha?!?! OH MY GOODNESS! Her and I go way back! :)
JoEllen
You are on video 24/7? I laughed so hard I almost snorted. You know how when you laugh so hard it almost sounds like you're crying? For a second, I thought my roommate was going to come in and I'd have to try and explain myself in Russian. I love you!!
those pics of bella just make me smile and tear up all at the same time! seriously, she is such a trooper! I so appreciate and love, love, love the story of your sandwich eating on camera! bless you for being able to see humor in the midst of this frustration! we are continuing to lift your whole family up in prayer! much love, krisy
The comment about leads and all of the EEG stuff takes me back to our NICU days...and I cannot imagine having to do that all over again. So my heart is just breaking for you. I know you are scared. I know you are tired. I know you are sad. And I so wish you were not having to be all of those things. But you are also strong and faithful and filled with love for your daughter who is smiling in spite of all of her challenges. Hold on to that. Thinking of you every day. -Kelly (Julia's mom)
Julie-
I am sitting here crying as I put myself in your shoes and try to imagine just a little bit of what you're going through. My heart is broken for you and for Bella and for your boys and husband, too. Oh, and I would feel the SAME WAY about the sandwich. SERIOUSLY?!?! That's not helping, thanks.
You know what? You can talk to God about it RIGHT NOW. You don't have to wait until you're in Heaven. Tell him you're angry. Tell him you're confused. Tell him you're hurting. He is RIGHT THERE WITH YOU! While he promises us we will have trouble in this world, he also promises us he will NEVER forsake us...never leave us. He is with you in this storm!! Lean on him, cry to him, pour it all out to him! That's why he's there! He's carrying you!
I hope I don't sound preachy because my intent is to be encouraging. You are NOT ALONE. I will be praying for you, I love you.
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