Neurology called…

Carter’s MRI and EEG came back normal. 

I feel like a weight has been lifted. 

We still have a ton of questions that need answers, but this is a beautiful moment for me and my baby. 

I can’t wait to see him when I get home. 

How to stop feeling down…and other things I just can’t master

Seems like my down days are trumping my up days these last few weeks. I don’t know if it’s the endless barrage of tests or appointments every single day. Or maybe it’s the waiting on results I was supposed to get on Friday? I need a break. It scares me to think this will be our lives forever. 

Carter’s ophthalmologist called on Friday with clear MRI results and we have a follow up with her in one month.

The neurologist hasn’t gotten back, but I’m making the assumption I will hear something on Monday. Even if I have to make my way to the clinic to drag the results out of someone myself. 

I also have an appointment with a new pediatrician, an appointment with a GI doctor and a new weekly occupational therapy appointment. 

Is there an emoji in my text bank that just looks exhausted? 

I was sort of hoping that the results would be positive and vision related. I know that’s terrible, but now it’s very likely that it is neurological. Something I feel like I know is true, but I’m still in denial. 

I want to enjoy Carter in spite of all of this. I want to enjoy his baby stage. His very long baby stage. I want to be there for him in other ways. To laugh and play. Not constantly seeking out the next test or therapy. Not constantly waiting to hear back from a doctor, causing me to be on such an edge that I become angry. Angry enough to throw things. 

I don’t want to get angry with my baby. He didn’t ask for this and he doesn’t even know there is a problem. He is sweet and innocent and I hate that I am so angry about this situation. 

I just want some normalcy. Just a tiny bit of normalcy. 

Day 5: Nearing the finish line

The house is silent. No tv, no noise. Just me, my book and my Christmas tree. Baby bear is sleeping. Despite the fact that he woke up and had peed everywhere, he was in better spirits this morning. 

That saline had to get out sometime, I guess. 

We will be heading to physical therapy in a short while, then home to rest. 

I should be getting the results of the MRI today. I have a feeling my heart will sink each time the phone rings. 

What will I do if I just can’t handle the results? I mean, you always think you’ve hyped yourself up enough to be ready for anything, but what if you haven’t?

I’m scared to get a diagnosis. I’m scared if the future is already chosen for us and baby bear will have to suffer. I keep thinking I’m ready. 

I’m not so sure. 

Now we wait…

I need something to take my mind off of the hour long wait to see my man again. 

Sitting in the waiting room now. What a horrible experience to watch little man be sedated. It’s not about me, but I don’t remember the last time I got that pale. Nurses had to get me juice and fan me. Jesus. 

My sweet man. My sweet, sweet sedated man. I love him so much. 

I also need to say how thankful I am for all of the support and love Carter has. Those that have texted, those that have called and those who are here with me now. 

We love you all. 

Hello, Wednesday. Please don’t end.

I am terrified of this day ending. I’ve never wanted a day to drag on as much as I do right now. 

The sooner I go to sleep, the sooner I wake up, the sooner my sweet baby has to be sedated…the sooner I get results. 

I’ve never been more scared. 

God, and it’s like I’m fighting myself. I want to know so bad so I can help him, but my stomach is in my throat knowing I’m going to get a phone call before this week ends. 

I want, and don’t want, that phone call. 

I’m trying to drown myself in laughter just to get by today. Trying to think about anything but tomorrow. 

And it’s difficult. 

I’m just going to spend tonight in my baby’s crib. Sleeping. With him by my side. 

Repeat after me…I can make it through this week!

I’ve been waiting for this week for what feels like eternity. This week I might finally get some answers. I might know a little more about little man that could help me, help him. 

Timeline:

Monday: Early steps assessment at our house. We already see a private PT, but additional PT surely won’t hurt. 

Tuesday: EEG. My only concern here is we have to bring him tired and hungry. HA. 

Wednesday: a nice, break. 

Thursday: MRI. The long awaited MRI. 

Friday: Physical Therapy 

When we saw the neurologist a week ago, she started to explain to me what an EEG was and I stopped her to let her know that I knew. I know exactly what the purpose of the EEG is. And you know what I realized? I don’t want to know. 

I don’t want to know what an EEG is. I don’t want to know the difference between an MRI and CT scan. I don’t want to know how to relieve/treat torticollis. I don’t want to know the ins and outs of GERD and what medications work. I don’t want to know the motions to go through to help your child poop. I don’t want to know any of this crap. 

I really hope things start looking up. I feel so alone. I’m a pretty realistic person and living in the fantasy world of an optimist is making me doubt my strength. 

Good luck to little man this week. Good luck to us.