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?!