First, because I have to have something good to talk about today, could my little guy be any cuter with his big blue eyes and white hoodie? I don’t think so.
I’ve had a lot of people ask me how we are doing. The truth is, today, not so good. Honestly, right now, I’m having a little pity party for myself and my little family.
Yesterday we had a really good day. I actually had myself convinced that things were back to “normal” (whatever that means). Grayson ate better than he has in weeks, and did great in the nursery while I went to Bible study.
Then last night around 9:00 he had another seizure. He woke up crying and Ryan found him in his crib, soaked with vomit and white as a sheet, his lips bluish. The next hour was spent holding him as he vomited again and again. We bathed him, changed his (and my) clothes twice, and finally he collapsed in his daddy’s arms. No ER visit this time, just a call to the on-call pedi who instructed us to give him Zofran and keep him hydrated. After about an hour, we put him back to bed and he slept until 5.
He napped a total of about 4 hours during the day today. It would have been more- his poor little beat-up body is so exhausted, but I had to wake him up twice- for physical therapy and then to go to his neurologist appointment (good timing, G, by the way- having your second seizure the night before an already scheduled neuro appointment).
The neurologist appointment was rough- G’s EEG had some abnormalities- he described them as little “blips” every few minutes where something is not firing correctly. He confirmed our suspicions that G had a seizure last night (based on my description of what happened and how he looked) and 2 seizures means a diagnosis of epilepsy. He will now start taking anti-seizure medication twice a day. I’m trying to look at this as just another piece of the puzzle that we need to have a diagnosis, but this piece sure is hitting me hard.
After we left the doctor, we drove to pick Hank up from daycamp. I had to get something from the office, so I brought G in and we visited with everyone at work for a little while. Then the vomiting started, again. I was soaked, Grayson was soaked, and the floor was soaked. And once again, Grayson has nothing left in his tummy to help him gain weight (his size 3-6 month jeans were falling off him today).
We got home and I set him down in the rock and play sleeper while I called my mom. Then I talked to Ryan for a few minutes until he started throwing up again. I gave him a bath, another dose of Zofran, and a bottle of Pedialyte, and he’s been asleep since 6:00.
I am worn out. I reek of vomit. My house is a mess. My baby has epilepsy, and will be 13 months old on Saturday and still can’t sit up on his own. My drivers licence expired last week on my birthday and I’m wondering when and how I’m going to make it to the DPS with a vomiting baby to get it renewed.
Can I just scream right now?!
12 thoughts on “Tonight, I Just Want to Scream”
Oh E… So much stress and worry and heartache. I'm so sorry. Liam was very sick for about a week and a half and it wore me down. You, on the other hand, constantly show so much strength in handling the cards you are dealt. And when there comes a day that you need to scream, then DO IT!!!! Yell at somebody, break a few plates, just let it out. We are all here to listen– I just wish that we were closer and that there was something I could do. I'm thinking of you and sending lots of love your way.
I agree with Stefanie…..scream, break some plates, cry, let it all out!
Oh, and no, I don't think he could get much cuter. That picture is precious. Love those eyes!
Yes, scream, break things… then kiss that beautiful boy and come escape with me for awhile. I love you guys!
Whatever you need – we are here. We are praying. Love you guys.
Jeez! If you won't scream I'll scream for you. I don't know how you aren't scream constantly. You poor thing. And poor Grayson. I can't imager handling all of that. I hope the seizure medicine helps, and that he stops throwing up and can start puttin on weight. I hope he just gets better and soon. Do you both can get some much needed rest.He sure does look cute in that white hoodie.
So very sorry for the rough rough day, I wish there was something I could do to make it better. Hope you all get a good night't rest and G feels better and like eating tomorrow. Continuing to think about you all. Adorable pic, love love it.
you need to scream, cry, yell, cuss, bang your head against a brick wall, and take a vacation. but i know you cant do all those things. remember, you are superwoman and make our jaws drop with every post on how you handle life with such strength. praying for you guys and sending a big hug.
Love the white hoodie.. He looks cute and snugly in the carseat.. Just thinking and praying for easier days for you and your little man…
That is a lot for anyone to handle–be sure to take care of yourself during all of this. You are strong and your baby is strong, and eventually, you will get all of this sorted out. Hang in there, and I will be thinking of you and praying for you. Take good care! And, Grayson looks SUPER DUPER TURBO STYLE CUTE!!!
I'm so sorry. I wish we lived closer to each other. We could cry together. You are a strong woman with a heart of gold. Grayson is beautiful. I think that he and Sweet B are plotting to send us to our early graves 🙂
Sounds like you guys have had the stomach bug. Katie had it a couple of weeks ago and gave it to me and Brannon. A few days later, Heather (Brannon's sister) got it and finally mother came down with it.I'm truly sorry about the seizures Grayson is having. That sounds so scary, but maybe it's a blessing in disguise. Sounds like you're beginning to get some answers. I miss seeing you two, and hopefully we can get together soon!