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. 

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Day 2: We keep on 

I’m no doctor, but clinics really need to rethink their EEG setting, especially if you want a 6 month old baby to sleep. 

For starters, boo bear was awake from 7:30am until noon. He was a nightmare, but wouldn’t we all be if we were forced to stay awake? So screaming up and down the hallway we did, until they took us at noon. 

The room was not what I expected. Music playing, bright as hell, and an uncomfortable adult sized hospital bed…I’m not lying when I say boo and I laid there for 40 minutes before getting about 5 minutes of sleep. And that was after I covered his face with a burp cloth. 

All in all, he was exceptionally good. He’s so sweet, sometimes I feel like my chest will burst. 

We should find out the results tomorrow. Then on to the dreaded MRI on Thursday. 

We will get through this. And come out shining on the other side. 

Like a diamond.

Dear Mom, I Love You

Mom,

I wanted you to know how very thankful Carter, Casey and I are for your love and support. There is no one better to help Carter reach his milestones each day.

There is no one else he would rather be with. 

I can’t thank you enough for staying home with him where he is loved and comfortable.

I can’t thank you enough for listening and following through with my strict routines when all I want is to help him progress. 

I can’t thank you enough for always thinking of Carter in all that you do. 

He is a very lucky little man to have a Mia as great as you. 

Carter adores you. We adore you and to be honest, I’m not sure I could function without you. 

We love you so much. 

Day 1: We survived 

Today has come and gone. Early Steps application was a quick process. Now we wait to see if little man will qualify, even though we know he will. 

The evaluator will be out in 8-10 days to assess. 

4 more days to go. 

Tomorrow we are putting little man through the EEG. I say putting through because I don’t think this little man deserves it.

I’m actually more concerned that they want us to keep him up from 5:00am until the noon test. Little man is going to be an angry man. I don’t want to deal with that wrath!

Hopefully tomorrow comes and goes, as well. Positive vibes. 

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. 

You can’t see the rainbow without a little rain

How to start? Today has gotten to me. The pressure of intense home therapy, the fussiness and screaming, the feeling like I’ve seen NO progress. It got to me. 

Maybe it’s knowing this week will be difficult. Sweatingly, hyperventilatingly difficult. 

Little man has been in the worst mood today, constantly screaming and we don’t know the reason. He’s fed, he’s warm….we don’t know. 

I have been pretty lax lately with the home therapy since it was Thanksgiving, but told myself that I’d hit it full force this weekend…good lord. 

Little man did well and little man did not so well. It’s frustrating. I feel like our life will never get easier and he will never be happy. I feel so lost and hopeless today. 

I googled different exercises and symptoms til I was blue in the face. I just want an answer. I need to see something happen. I want him to hold his head steady. I need him to. I’ve been working so hard and he just doesn’t seem to want to. What does that mean? That he never will? Can I accept it? I have to, right?

I hope tomorrow is different. I hope we have a better day. 

One post a day, helps my faith stay

Pen to paper, keyboard to screen, however we choose to vent…I find that working through this journey is easing up by even the slightest bit by putting my feelings into words. 

Everyone, from my family to my therapist, has told me to take this journey day by day. So every time I wake up, I try to start fresh. New day, new feelings. And it is all dependent on little man’s mood. 

Today, we focused on each other while he lay in his crib. It lasted about 2 minutes, but it was two minutes of awesome. He knew I was there and he was listening to me. I can’t express the emotion behind what that feels like when I wasn’t even sure my baby knew who I was. I know now, he knows. 

Then, as the day goes on, my feelings fluctuate. I don’t know what my one year old will be like. I don’t know if therapy will work. The slow progress will certainly get a parent down. I was always hoping for the light switch moment. The moment when it flicks on and he just gets it. I learn a little more each day that might not happen with little man. 

But I’m encouraged by his little moments. Hoping they will eventually turn into big moments. 

He knows me. At least I have that. 

Be obsessively grateful, because He is good

Our first Thanksgiving in our new home, our first Thanksgiving as a family. Turns out, Carter is not fond of crowds. Looks like he actually did inherit at least one of my traits. 

Also, another first, we didn’t go anywhere! We stayed home in our pajamas and those who wanted to see little man, came to us. How very thankful we are!

This beautiful day of firsts also woke me with the most precious gift. Carter playing with his mobile. Actually using his hands to play with the toys. I cried. It was the best part of my day. 

I am forever thankful. 

I spy…a sonic cup?

We have struggled for the last 7 months, trying to understand Carter’s vision. The first ophthalmologist we visited when Carter was around 4.5 months adjusted, said he was suffering from delayed visual maturation. He also said it should resolve itself by 6 months adjusted. 

Fast forward to 6 months adjusted, no real changes. We visited another ophthalmologist who said how bizarre it was that he would focus on black and white objects and mentioned he definitely had a form of nystagmus. Great information to have had months ago. 

She ordered an MRI which we are patiently waiting to happen on December 1. 

Until then, we work diligently every day to help strengthen Carter’s eye muscles and vision.

Today, he played with a Sonic cup. A stupid sonic cup. It sounds like it wouldn’t be a big deal, but it is huge. Not only did he see the cup, but he tried with all his might to play with it. His arms are still jerky and uncontrolled, another reason for the MRI, so this is hard work for him. 

Other things he has recently noticed:

  • Rubber duckie
  • My hands
  • Bathtub cup
  • Fitness ball
  • Pink travel pillow

This is HUGE!

Maybe all of our hard work is paying off? Maybe we are really helping him? Today, it feels like it. Today, it feels great. 

I will NEVER get rid of this sonic cup…