Saturday, March 21, 2009

Hello to all

Happy world Down Syndrome day to you all. And happy Twilight day to all you Twilight fans. Got my DVD already.

So it seems most people feel how I do about saying downs. Anytime they call Jax by anything but Jaxson its insulting. He has his own personality, likes and dislikes. If I want to mention something about down syndrome I don't think downs is terrible.

Anyway. Monday I take Jax to his hemo doc for the first time since our horrible hospital experience. My pediatrician has already talked to him about what she feels and what she wants to check. He has lost a little bit of weight but he's still 20.4 lbs which is huge for him. He's never broken the 20 lb mark in his life. So its not good weight, its all in his face and upper arms. His legs are still his little peg legs. My pediatrician doesn't know what a good way to fix his narrow SVC is. I told her if they can stent it in the cath lab that would be no biggy for Jax. She said she didn't think they could do it in the cath lab, that it had to open chest. Yikes, we weren't wanting that again quite this soon.

He did really well after his last open heart, so I think he would be fine, but you just never know, expecially with the heart. There's always that chance that they heart will be naughty and ECMO would be needed. We won't think of that. We'll see on Monday what they think. He's really not being effected except for the puffiness. But that is the main vein that feeds back into the heart, I want it working the way its supposed to.

Countdown is on, 12 days until vacation, wahoo. The bad part is, Carter's baseball games start the day we leave, and he will miss 5 games, yikes. I always forget that baseball starts so early in the spring. I have to go on vacation when my kids go offtrack so they don't miss school. So we are leaving Friday night instead of Friday morning so he can play his first game. Then he will miss the next four games. But we won't be thinking about that in sunny California.

First its Legoland and Sea World, then a quiet few days with family and to meet sweet little Zoey and her family. The beach of course, then off to Disneyland for 5 days.

Pray that Jax is not naughty so we can enjoy a much needed vacation.

15 comments:

Junior said...

We will be praying that Jax will be healthy and you can have a wonderful vacation. Also prayers for your appt.

Love the picture, Jax looks so happy.

Hope said...

I'm a new reader, so I hope you don't mind if I add you to my blog list. Jaxson is gorgeous. Have a wonderful vacation.

Praying...
Hope

Mandy said...

i don't think that sweet face could be naughty :)
Good luck on your travels - I will keep your family in my prayers.
Mandy R.

mom said...

I hope you have a wonderful, and I'm sure much needed, vacation. Jaxson, you be good! Find the prettiest seashell ever and say hello to Mickey for us. We found out last time in CA that if you find the "root" (the big clump in the middle) of the seaweed that washes ashore and break it open, it's full of baby starfish. We tried it and there were actually tons of them in there. Our thoughts & prayers are with you--

Patty & Jaxon

Mommy to those Special Ks said...

:) You have an award waiting for you on my blog!

Becky said...

please DO come visit. It will be fun to meet Jaxson. :) Can you believe we are STILL here? CRAZY!!!

Kristine said...

Thank you for the lovely blog!! I've just found it and I'm enjoying reading through old posts. :)

Jaxson is just beautiful!

My little girl, Katie, also has a brain injury, so I can relate on that front. She contacted GBS Meningitis and had multiple strokes.

Druava Family said...

Have fun on your vacation, give us a call if you stop here in St George..even if it is at In and Out Burger...Enjoy Disneyland :)

Heather said...

Jax,listen up ... Zoey is expecting to see you so no surprises,okay??

Mandy Buntjer said...

Have fun on your vacation!! Your sweet family deserves a lot of fun!! Hey Julie wrote me back about the UDSF calendar. She said to email this person shaleebooker@yahoo.com if you want Jaxson to be in the calendar! Hope that helps!

The VW's said...

I'll be praying that the appointment goes well and that that Jaxson will behave himself so that your vacation can go on as scheduled! I'm so excited for you guys! I hope that you have a terrific time!!! I'm so jealous that you get to meet Heather and Zoey though! Give them a hug for me!

As for your last post, on whether or not to say downs or not: I do get rubbed the wrong way when I hear people say that. It doesn't bother me so much when you use it in your posts, probably because you have a child with Down syndrome. But, usually when I hear it or read it, it makes me a little mad. I think it's because I look at Gavin as a person/baby first. He IS NOT downs! He HAS Down syndrome! Just like my oldest son HAS allergies or cold induced asthma. He ISN"T allergies or asthma! This is just my opinion and maybe it's because I can get very sensitive when it comes to my children. Actually, if you asked my husband, he'd probably tell you that I'm sensitive about a whole lot more than my children, but that's another topic all together...:)

Give that cute boy a hug for me! His pictures always make me smile!

The Hortons...one day at a time. said...

Can we come on vacation with you??? Enjoy your time with your family, you deserve every second of it!! We are praying that Jax stays healthy and the his appt. goes well on monday!!! Wear some fun mikey ears for me!!!!

Kele said...

Have a wonderful vacation...I am jealous!
When looking at that cutie Jaxson's picture it is hard to imagine that he could ever be naughty... he! he! I know ALL boys can be naughty, I have one of the biggest stinkers in town, and, he, too, is as cute as Jaxson!
HAVE FUN, and again, Lacey, your doing a wonderful thing with your blankies!!

Kim Rees said...

Have a great vacation and do some resting for me! I am sooo jeolous! I wish we were going on vacation, hopefully this summer. Well, Jax better behave himself so all of you can have a total blast! Best!

Denise said...

Just wanted to let you know that we just got back from the San Diego Zoo and Sea World yesterday and had a blast. Just don't forget your sunscreen!!! Even though it wasn't hot, the sun is intense by the ocean and we all got sunburnt. Yep..mom of the year, I burnt my little babies face. And I am from SoCal so you would think that I would know better but I just wasn't in sunscreen mode yet. I hope you have a great trip and that Jax's surgery will go very smoothly when you get back.