Wednesday, March 16, 2011

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!

20 comments:

Scrappy quilter said...

So sorry to hear that Jax isn't doing so well yet again. Hope you can get some answers on the
12th if not before. Love those little ones...both so cute. Have a safe trip to Cali and back. Hugs

Rochelle said...

Have a great weekend. Give Ella, Zoey and familys hugs from us!

Alison said...

Love the last pic of them together.

Have a great weekend!!

Chris, Becca, Abby and Jocelyn said...

Looking forward to meeing you at Ella's party:) Your sweet little girl reminds me of my little girl, Jocelyn! She can't wait to play!
Becca
www.thehuthfamily.blogspot.com

Erin said...

You do sound extremely busy! Love that last photo and of course the bed head!

The VW's said...

Such sweet and adorable pictures!!! Hope you have a safe and fun trip to California! Love, Hugs and Prayers!!!

Simply, Sarah said...

I just thought of something I read on another blog...Seattle Children's has specialists for seizures called epileptologists. I think that's the right spelling. It takes a while to get in, but that might be an option for Jax? Or, you have already seen one, or there'll be some in CA, I don't know. But, I'd never heard of them and thought you could use the info.

Erin said...

:( Not happy to hear the status seizure news. I hope you get an answer soon, maybe that VNS will be just what he needs! I hope! What an awful interpretation to read. Have a great weekend, enjoy Disney! We are going in a couple weeks!

Amy said...

I feel awful. I am so sorry I am cheering ablout Gabriel and Jax is still struggling. I apologize. SO glad that Becky put us in touch. Praying for healing for Jax and you all too. Loves how arina loves on him.

Holly said...

that's what I look like after I wake up too...
I can't believe she's so tiny..I always pictured Arina to be bigger than Brooke, but Brooke's almost 19 whole pounds...haha
have fun in Cali, hope you hear from Jax's doc prior...

Cammie Heflin said...

I get to meet you in 3 days!!!!!!!!!!

Michelle and Sean said...

I'm sorry to hear about Jax EEG.I wish it wasn't so bad.

Drive safe and have a lot of fun! Hopefully the weather will change and it will be nice for you!!

As always love the pics!

Zoey's mom said...

The kissy pictures kill me!

I hate the little bit of what was in the report.We REALLY need to get to the bottom of this.For sweet Jax.for you all.Not good fro him and not good for your worried heart.

See you soon!Can't believe you will be here and Ray will be here for good and then you ... for good!Fun times.Might not seem like it now for you but it will be and maybe you can get the little man off the oxygen down here.Hoping it will help.

Kellan's momma said...

Lots of prayers coming your way, for Jax and a safe trip. I hope you have a great time at Ella's b-day party! And I love the pic of Arina kissing Jax!

Colleen said...

That bed head of hers is too cute! Have a great time in Cali!

Alicia said...

Seizures suck. Sorry to hear that about Jax. I hope you get the answers you need.

Have a great weekend and a safe trip!

Anonymous said...

All I have to say it you rock! Good luck to you and the family on the changes going on. You and yours are in my prayers. Blessings to you.

Shelly Turpin said...

be safe and have so much fun!

lotsofsparks said...

I've never commented on your blog before, though I visit frequently. I'm just a non-adoptive mom who prays over the orphans on RR and their families. Imagine my surprise today when I read the word "Fontana" in your post-I live there. If you need to know where things are or any help getting around to different places, I'm your girl!
My email is lotsofsparks@att.net
Laurie Sparks

Mama Mason-Mann said...

OMG! That picture of Arina is awesome!!! I LOVE her hair and that look on her face! And the pics of her and Jax are adorable. I'm sorry to hear about the Jax stress. I hope you get better news than you're expecting. And of course, I'm jealous of your trip. Hope you had a wonderful time.