Getting ready

Its been super busy and crazy around here. We have had a ton of appointments and trying to get ready to head to Cali tomorrow for the weekend. Daddy has been packing up all of his clothes, because he starts work in Fontana on Monday. I will be driving home Monday by myself. I'm a bit nervous about that, but I know we'll be fine!

Jax had an EEG last Thursday, and a neuro appointment Monday. We saw the nurse practitioner instead of his neuro, because his neuro was booked out, and with the increased seizures, we wanted to get him in. The NP said he had looked at the EEG. He didn't act like the results were a huge deal. We talked about changing meds, and also the vagal nerve stimulator. I had been wondering about that because its used for kids that have multiple medications fail to control seizures. And since his seizure activity is constant, I wonder if it would help control it better. The NP said he would talk to our doctor about changing a med, and the VNS, and then he would call me. Well I got a call yesterday from scheduling saying that our neuro wants us to see him on April 12th. So now I'm a bit worried on why I didn't get a phone call and why he wants us to come in. I looked his EEG up online (man I love that I can do that!) And here is a little of what it read.
"CLINICAL INTERPRETATION: This EEG is extremely abnormal due to nonstop
potentially epileptogenic abnormalities, out of the frontocentral head regions
perhaps more so, on the left. This could be consistent with an intractable clinical seizure disorder. Similar
patterns can be seen in nonconvulsive partial status
epilepticus."
So he's basically in status, and seizing nonstop. My ped is going to email neuro and see if she can get an answer before our appointment. So I'm not spending the next 3 weeks freaking out!

Arina had her 18 month check up today. She is a rock star, plain and simple! We are going to get a follow up swallow study, after getting her tonsils and adenoids out. And also a follow up sleep study, to see if it helped her apnea.
She is just under 17 lbs, so even though she looks so tiny, she has gained! She is also on the DS chart in about the 17th percentile. So she's not abnormally tiny, she just seems like it to us!
I bought her a sippy cup with a straw, and after only a couple tries, she can do it like a champ! She still pushes it away and wants a bottle after she eats, she's too lazy to finish the milk from the straw. We'll keep working on it!

Since we've been so busy, the camera has been collecting dust. But I knew you'd want your fix, so I found some recent pics.
Its been a long night!

My beautiful boy!



We are heading to Cali tomorrow afternoon. We have the birthday party Saturday, and Disneyland Sunday. We head home Monday, while daddy stays there and heads to his new job. We'll see you Tuesday, prayers for a safe, uneventful trip would be appreciated!
*and for those that asked, Jax is still on his oxygen. He can't come off or his sats drop. I just have to put the tubing under his shirt because the booger is a tube puller!