Wednesday, May 13, 2009

Feeling refreshed

First I have to thank you all for the overwelming response of kind words from my last post. I have so many great new friends, and I love that we can support each other and lift each other up as you have all done for me.

I talked to my ped. today. She read the official report and it doesn't say anything specific. I told her how I felt about the seizures ruining his brain. She said over time it does effect it, but she's more worried about his lungs than seizures taking his life at this time. The only scary thing right now is if he went back into status. We'd then have to make decisions on how far we would take things. I've considered taking him to a neuro in California. I've heard two people mention him so I think he's worth checking out. My ped. will support whatever I want to do. She also thinks the SVC problem right now is what really needs our attention. Its obvious his face is still extremely puffy, and he is super cranky. We are just waiting for our hemo doc to call us about the doctors out of state for a plan.

I'm just super exhausted. I haven't been sleeping because Jax is up all night. And during the day I'm running constantly so I can't stop to take a breath. I finally was able to squeeze in a badly needed haircut tonight. After Carter's game I ran to the store by myself and got my hair cut. I feel like a new women, if only I could catch up on my sleep. Ya right.

If only I knew when I had this picture taken how fitting it is for him, my little angel with 9 lives.

20 comments:

Junior said...

Lacey I sure hope you can find some time to get some sleep.
That picture is beautiful.
Lots of hugs and prayers.
Heidi

Ruby's Mom said...

Ohhhhhh what a sweet picture!!I'm sorry you haven't been getting much sleep.It is so hard to go on no sleep.
Glad you were able to get a haircut.I know I feel like a new woman when I get mine cut:)

Heather said...

THAT is the cutest,most precious picture EVER!!I am sorry I missed the last post my friend.My night at the hospital and never have a computer.I wish I could reach across the distance and give you a hug and tell you once again what a fighter Jax is but you already know that.He is strong and courageous and he is going to find his way through this.And yes Donald Shields is Zoey's doctor and I HIGHLY recommend you finding a way to get to him.I know you have to have a physician's referral only so beg,borrow and bribe a neuro there to get it done.Wish I had some pull there but no way around the referral.Praying for you my friend and for sweet Jax.

Shari said...

Yes, I hope you can find time for sleep or a nap. That picture is adorable! I continue to pray for the precious babe! He's so adorable!

stephanie said...

Amazing what a haircut can do! That picture!!!!!!!! The sweetest.Praying you can get to the doc in CA. Prayers coming your way

Aspiemom said...

That picture is so sweet!

Hoping you can get some rest!

(I must have missed the last post.)

Alyson said...

Precious precious precious little angel.....awwwwww......His little tushy is too cute :0)

The VW's said...

Jaxson is definitely an angel!

I'm glad you are feeling somewhat refreshed, but I hope that you are able to get some much needed sleep soon!

I'll be praying that all of this uncertainty with Jax and his pending surgeries will get cleared up soon! Waiting and not knowing can be so difficult!

I hope he and your other boys are over their flu symptoms! You have been one busy Momma!

Did you happen to talk to your Ped about breathing treatments for Jax?

I'm praying!!! HUGS!!!!!

Kim Rees said...

Jaxson definitely is an angel on earth just like the picture! Such a neat picture! Continuing to pray for you and your family. Said a prayer right now for Jax. Glad you got some "me" time. Very important. Take care of yourself and get some rest. God Bless. Hugs!

Michelle said...

What a precious picture. Continuing to pray. And-do you mind if I ask what it means when you say he goes back into status?

Michelle said...

Lacey, thank you for explaining.

Lillian's blog is where I try to keep things specific to her. I try to keep her medical status and updates there.
Surviving it all is more of my personal journey through the new life God has given us.

I found you through the VW's blog.

Thank you for stopping by and answering my question.

sturpin said...

Lacey, I wish I could come babysit so you could take a nap (or two or three). It sounds like you have a wonderful pedi. That is a blessing

Tammy said...

Maybe you could send Jaxon's records to the specialist in Cali first, before you take him out there. Perhaps he could consult with the neuro's here.

Have you seen the pulmonologist at PCMC? Daftry? He's amazing. Truly.

ANewKindOfPerfect said...

Where in CA is this doctor? Perhaps we can visit if you come. :)

I hope that you get some sleep.

Conrad, Megan and Our Precious Keaton said...

Hello dear Lacey, im so sorry I am only checking in now! My heart is broken and tears fill my eyes. But just know that with God anything is possible! He is such a inspiration as are you. Jaxson is so angelic and beautiful and precious in the photo you posted! A photo to cherish forever! You are one special woman with one special little boy! Words escape me but what I do know is that God has a great plan for little Jax! Hope you get some rest my freind! Big hugs for you all! Lots of Love, Megan and Keaton

Emily said...

That picture is precious! Enjoy your new haircut... and hopefully soon... some much needed sleep!

Terri said...

Lacey wow a LOT has been going on in your life. First I LOVE the picture of your children on Mother's Day post.....just precious! Next girl will you ever catch a break. I had to tell Ava last week that enough was enough and I wanted ONE whole week of her doing fabulous......so far she is holding steady!! If it was that easy huh? Oh LOVE the sweet picture of Jax as an angel. He is a beautiful little guy. Just wanted to know that even though life is busy I think and pray for you guys a lot!

Michelle said...

Oh he is an angel and we all LOVE him and pray for him, for you, for peace and for all of you to find your way, find answers. HOpe you get some sleep my friend!

ANewKindOfPerfect said...

Silly, you asked where I live but I just sent you my address for Peanut's blankie. ;) Huntington Beach. Less than 30 minutes from Disneyland!

Nerakbar said...

Just to let you know that someone far away follows your blog and thinks about you as well as says many prayers for you and your family.
with love
Karen Cameron