Tuesday, April 13, 2010

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!)

23 comments:

B. McKenzie said...

still praying that those seizures stop and praying that you can see more qualified, helpful docs. Love the pics.

Rochelle said...

Sweet pictures. Have fun with your sister! Love surprises.

ANewKindOfPerfect said...

Oh boo .... :( I was looking forward to seeing you and Jax again! I guess Peanut and I will make a day of it then. :)

That is the most smiles I have seen from him in one post - love it!!

The VW's said...

Sorry you can't make it to California, but I bet you'll have fun at home with 2 of your boys and visiting your sister!

Those smiles from Jax are priceless! He looks like a little flirt in a couple of them! Man, I'd like to get my hands on him.....he is so stinkin' cute!!!

Keep smiling Jax! Love and Hugs!!!

Kristin said...

Jax looks great! What a fun surprise (for you mom).

Kelli said...

What a handsome little boy you are Jax! I love those sweet smiles of yours :)

Anderson Family said...

Love Jaxson's smiles - they always make me happy! Four and five liters of oxygen seems high - that is weird if he isn't sick. Sorry you aren't going to California this go around - but yay for seeing a new niece and your sister!

Corinne Judy Smith said...

Love the pictures you got of his smiles!! He is so cute! So excited for you to get a visit with your sister and baby niece.

Stevenson Family said...

Oh... how I love his smiles!! He looks so good & happy!!

April said...

those pictures are priceless... love his grin!!

ABandCsMom said...

Love those pictures. Love those smiles!

Alison said...

What gorgeous pictures of Jaxson!
I hope you have a great time with your sister.

Ruby's Mom said...

Jax is so sweet.Enjoy your visit with your sis!

Phoenix's Mom said...

Oh sweet boy, I love those smiles!!! I pray we can't get answers to stop the seziures! And some day we are going to have a Phenny and Jaxson introduction party!!!

Nancy said...

Love, love, love those adorable smiles! Praying you will get some answers about those seizures soon!

Michelle said...

oh my gosh look at those smiles! so adorable!

ANewKindOfPerfect said...

I forgot to tell you - when I pull up your site now, it pops up a gwendolynstrong log-in box. You must have them on your blog list, and they are passworded now or something? I don't know, but it comes up every time I come here!

ParkerMama said...

Love that boy!

Tina said...

Ahhhh...those are the sweetest. I love those pictures I mean that young man is getting handsomer all the time. I wish I could give him a real life hug.
Enjoy your time with your sister, that is so great that you get to see her and your niece!

Becca said...

An incredibly beautiful smile. Have a fabulous time with your sister!

sturpin said...

oh Jax - 4 and 5 liters, what's up little one? I would love the seizures to stop too.

Anne and Whitney: Up, Down and All Around said...

LOVE the smiling pictures of jax!!! also - i need to go check out your adoption blog, i am so happy for you that makayla will soon be yours (hopefully very soon!!!) :)

Anne and Whitney: Up, Down and All Around said...

LOVE the smiling pictures of jax!!! also - i need to go check out your adoption blog, i am so happy for you that makayla will soon be yours (hopefully very soon!!!) :)