Sunday, August 22, 2010

Notes to self

(Not to self: Lagoon is NOT Disneyland! They do not have rides for autistic and handicap children. Its best to leave them home and just take the older kids!)

We went to Lagoon today. We wanted to go with our local Down syndrome group last Monday, but I got the days mixed up and we missed it. We don't go to Lagoon a lot because it is way overpriced for what you get. But since we hadn't been in a few years we decided to give it a try. The day was beautiful, just a few white fluffy clouds. But as we headed the hour away, the clouds increased. Tanner had a fit from the moment we arrived when he saw those clouds. I kept telling him that they would go away. Nope, they got worse, and when it lightning and thundered, that was the end of Tanner. We stayed for a whole hour, and got in 3 rides! Thank goodness its bounce back time. So next Sunday we take Tanner and Jax to aunt Krissy and just go with Mondo and Carter!



Notice Tanner with the hands over the ears!


(Note to self: Yelling at the boys while taking pictures of Jax will produce a super pouty face to get on camera!)



(Note to self: The ventilator has been the best thing in the world for Jax!)

I can't believe how good Jax looks since getting the vent. I can visibly see his breathing relax when I put him on. He sleeps so much better, I just wish we had thought of it sooner. We noticed that he still didn't sleep well even after we trached him. We chalked it up to brain injury kids don't sleep well. Although its scary that he is getting to the point of needing a machine to breath, its nice to have him healthier right now.
Another thing I've noticed since the vent is he is much more interactive. I don't know how the vent can help that, but he's smiling like crazy and his vision seems better. He is now looking at faces if you are close to him!
These new tubes snaking into his crib are a lifesaver!



29 comments:

Rochelle said...

Oh poor Tanner, why did those storms have to come up on your day out. Sorry buddy.

Jax does look good! I am so glad the vent is working well for all of you.

mom26kids said...

sorry about your lagoon day. And that is the cutest sad face I have ever seen

To Love Endlessly said...

Looks and sounds like it was quite a day. The super pouty face...way cute!

Holly Wolly said...

I love the pouty face! You're going to think we're awful, but sometimes my hubby will find something to yell at Hope about because she has such a cute pout too, then he get snuggles immediately after!
Too bad for Tanner...ruined his fun...

mandd3 said...

Jax looks so much better! Even his skin looks healthier. I'm so sorry about your busted trip. I hope next weekend is a blast.
Oh, and you better not yell at those boys anymore, that bout is just about to break my heart!

Jessica said...

I for one am now a fan of the pouty face! LOVE IT! Glad to hear the vent is working out. I am having Jax withdrawls...When are you free? I was wondering if you have ever thought of doing music therapy with him??? We coould start our own little group!

Cammie Heflin said...

I agree! Jax looks awesome!! Poor Tanner, hopefully he will be okay with missing out next time and enjoying his time away! Cooper is always thrilled when he doesn't have to experience something that caused him such discomfort!

Alison said...

Poor Tanner - my girls hate storms too! How great that the ventilator is helping Jaxson so much.

Denise said...

Tanner can come and stay with us so he doesn't have to be tortured with such places :) Jax does look great!! Hope everything is coming together with your coverage of the kids while you are gone picking up Makayla. I predict you will be traveling in a month.

Lovin Lane said...

IE the Organizer.... You might google Knock Knock, cuz at one place that did sell just the note pad for all the stats, which I really love and if I bought it separately that would be the part I would want.... I looked at your blanket site that other day, how awesome is that... What a fun fantastic thing to do..... Marcy

The VW's said...

Love the pouty face!!! Looks similiar to Gavin's! It's so nice to read that Jax is doing so well now! What a relief and what a blessing! Hugs!!!

April said...

Oh I'm so glad the vent has been a blessing!

Derek, Kenzee and Gage said...

SO glad to hear all the great things happening from the vent! It sure was great to finally meet you all, I'm excited to get together more often!

suelmayer said...

Jax looks really good. Sleep and good oxygenation can do wonders for any of us. Love the pouty face, Sam makes the same one. Those darn clouds, you can only control so much. Loved all the pictures.

Colleen said...

That sad face made me LOL. The vent probably is helping him sleep and breath better which equals more energy and awareness. We noticed that after Isaac started using Bipap.

Skye is the Limit! said...

I would really love to meet this little man.

Zoey's mom said...

We love you so sweet Jax.Did you know that?

Becca said...

I know that pouty face soooooo well!!!! It made me pout in sympathy. Awwwww. :-(

Melissa M said...

I'm so glad that you are seeing an improvement with the vent!! And I think the pouty face is adorable.

The Fluck Family said...

he's probably getting the oxygen he needs and in turn is feeling better! yay! so happy that this has turned out to be a good thing. :)

ANewKindOfPerfect said...

Lacey, Jaxson looks GREAT! The pouty face is of course sad, but totally adorable as well. I am so glad that the vent is really helping him and you can already see a difference. That's incredible! :)

Poor Tanner ... it sucks that he was not happy at the Lagoon. And no, it's definitely not Disneyland! (I won't mention that we were at Dland all day yesterday ....)

Tia said...

I hadn't realised he only needed it when sleeping. My youngest has had overnight ventilation since she was 1 and it is the best thing we ever did for her (she's 5 now). With the vent, she has energy, she wakes with a glow in her eyes, she is chatty and happy and busy and active all day long. Without it (because there are nights when I give in to her plea not to have it, and because there are nights when we just can't get a good seal (NIV not Trach), she wakes up grey and headachey and horrible. I really hope this is the start of a new lease of life for Jaxson just as it has been for us.

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

that pout face that jaxson has is something else!!! sorry lagoon day didn't work out so well... glad the vent is making such a difference for jaxson :)

Shelly Turpin said...

Jax looks wonderful! I am glad the vent is helping. I just love that boy.
So sorry Tanner!

Jeana said...

Oh my goodness that pouty face just melted my heart. And yes though Lagoon costs as much as Disneyland its so not the same:)

Becky said...

We found the vent most helpful as well. I'm glad it's making his life easier.

Corinne Judy Smith said...

My kids were dying over Jaxson's sad face. Too cute! I'm sorry Lagoon didn't work out for you, but like you said, luckily you have bounce back passes and can go enjoy yourselves again.

Meghann said...

Love the pouty face!

LisaL said...

So glad to hear that Jax is doing better since the vent. Gotta love having enough oxygen and some good sleep to get you going! The pouty face is adorable!!