Jose and the children should be here around 2am or so tonight. They had to fly to Knoxville and rent a van to drive to Kentucky.
LIFE WITH ASHER RIGHT NOW
It has been an emotional week for sure. Asher had been doing better but Friday night he had a seizure in the bathtub. I was right there with him but there have been times before where I’d run real quick and get a towel or a diaper. I could only imagine if he had a seizure in a tub full of water, went limp, and drowned. Makes me teary-eyed even though he was totally okay afterwards.
I feel like I have to watch him so closely all the time. He’s a baby – I know we have to watch him closely – but it’s more than that. I have to make sure he doesn’t pass out and hit his head on something – or that he doesn’t have something in his mouth in case he passes out and chokes. His seizures can happen at any moment and sometimes I don’t even notice them. They are not the shaking kind of seizures but more of a – lifeless/blank stare into space – kind of seizure.
Children with Petit Mal Seizures can sometimes have up to 100/day. I know he’s no where near that – probably more like 1 or 2 a day but the thing is -they’re hard to catch. I caught one today because he was crying and mid-cry he completely went quite and I ran over to him. I found him staring into space – not following my fingers with his eyes – and not blinking when I waved my hand back and forth in front of his face. It only last a few minutes. I feel like he needs to wear a construction helmet just to protect his cute little head. He can just go down at any moment.
I finally got to hear a little more about Asher’s abnormal CT scan. He has a few cysts on his brain but apparently people can live with them their whole life and it never bother them. We have an appointment at Cincinnati Children’s Hospital in August. I was really hoping it would have been sooner but we had to fight to get that appointment as it is.
He has become very clingy to me. He wants to make sure he can see me at all times or he sticks his head on the floor and screams. I’m worn out. I think he’ll feel better when he sees his daddy and his brothers and sisters. I’m sure he’s so confused right now.
I got to talk to the girls and Gabriel on the phone while they were in Miami. It was precious talking to them. Our conversations went something like this:
Rosie: Hi mommy. I want to speak to Asher. (Apparently – she didn’t want to speak to me at all)
On Speaker Phone: Hi Ash. I’m coming to play with you. Don’t be sick anymore.
Mikela: Hi mommy.
Me: Hi Mikela.
Mikela: You missed my big puppy party. Everybody was there and we had cake and made ice cream. Now you have to have another party for me so you and Asher can be there! Maybe we can go to Disney World!! (LOL)
Malaya: Hi mommy.
Me: Hey baby.
Malaya: You in ‘tucky? Is Asher still in the hospital? I saw his picture with the stuff on his head. Gabriel has been bad. He didn’t listen to anybody today. Maybe he needs to be put in the corner when we get to ‘tucky. (She’s talking a mile a minute)
Me: Are you being a tattle tell?
Malaya: (laughing) – Don’t tell Miss Beth. (their homeschool teacher).
Gabriel: Hi mommy.
Me: Hey Baby-O.
Gabriel: Something really whiney….(couldn’t understand him)
Me: I’m sorry baby. What’s wrong?
Gabriel: Rosie. Rosie did it. (I have no idea what he’s talking about)
**No matter what Gabriel does – if he spills something – if one of the other kids does something – his initial response is always – Rosie did it!! Even when Rosie is outside playing and he’s the only one in the room – it’s always Rosie!!
I MISS MY FAMILY!!!! I CANNOT WAIT TO SQUEEZE THEM ALL TONIGHT!
Categories: Personal Stories