Wednesday, June 3, 2009

A lot of stuff to talk about

First of all, look at these adorable girls. Head over to the blankie blog to read their couragous stories.




Carters baseball team got picked to go to our minor league game and go out on the field during the game. I stayed home with Jax while daddy took him. The look on Carters face was priceless. This really was a great opportunity for them and they were sooo excited. I see Carter's future here. I think he will at least play minor league ball, if not the majors, Yeah he's really that good. And he truly loves the game. He would play every day if we would let them. He stood by the catcher because thats the position he plays.

Look what came in the mail bright and early this morning! Our nap nanny is here. I'm very excited to see how he sleeps in it at night.


Wow, this thing is amazing. I leave Jax in it for 5 minutes and he's out. Maybe its a magic seat. Ya think?

So Jax info is all over the country right now. I talked to a NP in Los Angeles and she told me to send his paperwork to her and she would give it to the surgeons to look at. She said it been done at their hospital. Sometimes in the cath lab, and sometimes surgery.
So his info is in LA, Boston, Michigan, and Aidens mommy is sending it to his docs in Oklahoma.
Jax hemo doc said that he doesn't think Boston will take that long. They were going to fast track it. LA would be the best for us because its the closest and we have family and friends there. Plus we hope to move there one day, so it would be nice to know the hospital and already have doctors that know him.
His hemo also said that they have done it here, its just different circumstances for every child. Well I know that. The radiologist here doesn't think it can be done in the cath lab because its so narrow that they wouldn't be able to thread past it to balloon it. They are nervous about surgery because he has a lot of collaterals around it and they don't want to nick one of those. They say if he has enough collaterals then he has sufficient blood flow and surgery is not needed. Well if he has sufficiant blood flow than why is he still so puffy, getting headaches and having more seizures?
Pray extra hard that one of these docs is willing to help us. If these other opinions all say not to do anything, then I will make my peace with that. Its just that I already don't trust the doctors here so I'm not taking what they say as the final word.
Cross your fingers.

21 comments:

The VW's said...

Those Blankies are beautiful!

What a fun thing for Carter to be able to do!

I'm so glad that you got the napnanny! It looks so cozy and the perfect size for Jax! I hope that he sleeps better in it!

I pray that you hear back from some doctors soon! LA would definitely be great for you guys, if they have good surgeons that can do it! I'll keep praying! HUGS!

Michelle said...

congrats to Carter...what an experience! I have been looking at those nap nanny's for P, but now she wiggles so much that I think she'd flip herself right out of one, but I think it certainly would have helped with all those ear infections and her reflux! Glad Jax likes it! :)
Yes, love the mountains...we do have a piece of heaven up here, but it's time for a change for so many reasons, and certainly time for the BEACH! :):) It's amazing how things just 'happen', ya know!? Her cardiologist is Victoria Judd from PRimary's. She was the cardio that made rounds at Timp when Preslie was born. So far, so good...I like her!But she won't be doing her surgery...someone else will...I am sure I'll get a name after the ECHO!

Junior said...

Such an exciting thing for Carter, congrats.
Jax you look very comfy in your nap nanny, hope it works very well.

we are praying hard that you get some good news from these docs and they are willing to help.

Emily said...

My fingers are crossed for you! One of these Docs WILL help you. I hope so for his sake at least! I am so glad he likes the nap nanny! He looks so peaceful.
Good job to Carter! He looks professional out there!

Maureen said...

You are so strong to be doing this for your son. Keep fighting for him. I will be praying that you get some kind of answer soon.

Denise said...

I can't imagine your frustrations in the different messages you get from each doctor....reminds us I guess that they are only human!! I pray that an answer will come soon. I, too, hope than the answer will come from LA. I thnk it would be so much less stressful for you knowing that you would be able to drive here (not fly) and have so many family and friends nearby. And of course for my own selfish reasons...I could finally meet you guys.

Heather said...

Beautiful Blankies as usual.And would you look at Jax in his new getup??Magic indeed.Secretly hoping LA works out,ulterior motives in suggesting it maybe!!!Actually, I want Jax to go where it's best for Jax.And soon.Love to you.

Alyson said...

I need a NAP NANNY for myself!!!! It looks super comfortable!!! I would be out in 5 mins as well :0)

You know that you guys are always and forever in my heart and in my prayers!!

Love

xoxoxoxoxo

Alyson

stephanie said...

Lacey, I will pray that the right doctor in the right hospital is guided to make the right decision for Jax. That something is done to help this sweetness.Soon!!

Great for Carter, he must have had the time of his life.
That nap nanny looks so comfortable, from the picture it seems Jax gives it a thumbs up.

stephanie said...

P.S the blankies are so beautiful!

Mama Mason-Mann said...

fingers, toes and everything else crossed!

Love the nap nanny. Dying to hear how it works. I'm considering getting one for Chloe.

mommaof4wife2r said...

my first visit here...came from debi's blog. i just want to say what an awesome and adorable fam you have here!!! you guys have some fun times...i like that! praying for you and adding you to my prayer log...tell carter, wat to go!!!!

Melissa said...

GREAT JOB on the blankies as always Lacey;) Go Carter!!!!

That chair looks like it IS working magic..ADORABLE!!!

Well, I will def keep my fingers crossed for you & the hospitals...we need Jax to be fixed & feeling better!! Poor baby has had ENOUGH!
[[HUGS]]

Lily said...

He looks so comfortable! Sweet dreams Jaxson!

ANewKindOfPerfect said...

Jeez, I sure hope that the doctors can decide who and where should do the procedure! It sucks that Jax has to deal with seizures and headaches and ick in the meantime.

Thanks again for the blankie, we LOVE it. :)

Alison said...

I will pray for some answers for you...must be so frustrating trying to get the right care for your child.

That nap chair looks great - I agree they need to make adult size ones!

Anderson Family said...

What an awesome adventure for Carter. Love the nap nanny - hope you get a well deserved rest tonight as Jaxson sleeps peacefully . . .

The blankets are beautiful - love the striped one.

And we are praying everyday for your sweet boy. I hope that soon you will hear from the doctor who will be the one who will help Jaxson. He deserves the absolute best care with the very best doctor. Praying....Praying....Praying....

Pam said...

How fun for Carter!!

That nap nanny looks awesome. Rhett has a little thing called a snoogle or snooglie that wraps all the way around him and props him up just enough but yet creates a nest for him.

He loves that thing. It has the same material as the nap nanny.

Are you going to the movie next saturday with hope kids?

I keep saying we are going to get together, and then I just sit here on my butt feeling sorry for myself. Stupid me.

Anyhow..I hope you hear from Boston, but in the same aspect I hope that LA can do what is needed. LA sounds like a great option.

Rhett might be needing that pacemaker sooner rather than later, and I'll be damned if I am going to let the dr's here do it.

I know it's not high risk...but yet it is because of his pulmonary hypertension, but still.

I'd rather go to seattle or denver.

Okay, I'm done rambling. Love you guys!!

Conrad, Megan and Our Precious Keaton said...

Praying extra hard that you hear from the hospital you meant to be at - I hope its LA as its the nearest for you and that you will have friends and family around you and to support you! The Magic chair looks so comfy! Jax looks adorable in it!
The blankies are really really beautiful!
Go Carter!
Megan and Keaton

ANewKindOfPerfect said...

Hi Lacey, thank you for commenting on the Miralax use! It's nice to know we're not alone. 4-6 ounces at one time and my Peanut would be retching and puking for days.

My Three Sons said...

I think Carter is going to be a star! I loved the picture of him.

Jax and the sleeping pillow, you'll have to let us know if he slept good for you tonight.

I'm praying that you will hear something soon from on of the doctors. God will take his time getting the doctor with the most wisdom for Jaxson. So be patient, he just wants what is best for our little guy.

Take care,

Kaci and Carson