A long overdue update!

I realized I haven't updated on Jax in a while. My head has been spinning out of control this last week!
Jaxson is doing really well. He still has antics that keep us thinking, keeps us on our toes. Last week for like 4 nights, his oxygen need went up to 4 and 5 liters at night. I kept looking for signs that he was getting sick, nothing. I changed my pulse oximeter probe, my oxygen tubing, and still found no real cause behind it.
He also has lost some weight. Not good on an already tiny 4 year old. Yesterday he was 21lb 10. He had been up to 23lbs. Thats a lot! But it does look like he's lost weight in his face and upper body, which would be a good thing. That means those blocked veins in his chest are forming big enough collaterals to support good blood flow. Also meaning we don't have to try life threatening surgeries to try and open up those veins. Although I am dying to see Boston Childrens hospital. I've heard its 10 times better than ours! Now we just need to put that weight back on somewhere else. Maybe in those chicken legs!

He does seem a lot more active. He's rolling over more and more. Which means he needs to be watched closely, because he can get to his tummy but can't get back over. And with no head control he gets mad on his tummy!
I want to make an appointment with the world renowned neuro Dr. Shields. I still think if we could stop all that constant seizure activity he would do even more developmentally.

I mean, can you imagine bigger smiles than this!!

I'm loving these, but I would love to see him laugh someday!

Ray and Mondo and Carter are heading to California for the weekend. We were going to all go, Ray is taking bridal pictures for his cousin. But I'd been having reservations. We need to save every dollar now that we've committed to this adoption. Then I found out last night that my sister that lives in Oklahoma is coming for a quick weekend trip. Bringing my baby niece that I haven't even met yet!

So Ray is going down to take the pictures, and I'm staying home with Tanner and Jax. I'm so excited to see my sister! (shhh, don't tell my mom, its a surprise!)