Merry Christmas to all of our friends and followers!
Wednesday, December 25, 2013
Posted by Lacey at 11:54 AM
Sunday, December 8, 2013
Jax is keeping us on our toes, which is why I haven't posted in so long. We went to Utah for thanksgiving. A quick trip because daddy has no time off so we couldn't come down for Christmas. I got horribly sick with the flu. Jax wasn't really sick, but he kept having these weird airway episodes. It sounded like stridor. I changed his trach multiple times, and it wasn't that. It was like his airway was collapsing. We decided to just hurry home so we could get Jax to his doctors.
Posted by Lacey at 5:46 PM
Tuesday, November 19, 2013
I've been wanting to write this post for a while. But I really wanted to use the DAS multiple times before posting about it! I want people to know that it's totally doable, and give some tips on how to make the most of your trip!
Posted by Lacey at 10:17 AM
Sunday, November 10, 2013
Munchkin is home again! Tomorrow will be day three home and we are still a bit on edge as that's the max days he's been home in a month!
Posted by Lacey at 8:57 PM
Sunday, November 3, 2013
Jax had three days home this time!
Posted by Lacey at 9:25 PM
Friday, November 1, 2013
Jax was discharged Wednesday, just in time for Halloween!
Posted by Lacey at 4:02 PM
Sunday, October 27, 2013
This is the longest hospital stay since we move to California two years ago!
Posted by Lacey at 9:54 PM
Tuesday, October 22, 2013
Posted by Lacey at 9:28 PM
Friday, October 18, 2013
Posted by Lacey at 4:21 PM
Thursday, October 10, 2013
If you remember we've had quite a rough time getting Jax the schooling he deserves. We finally had an IEP meeting a couple months ago. As of right now he is still doing home/hospital. We are working towards getting him in the classroom a couple days a week only for a couple hours. His stamina is very low, after only one hour with his teacher, he lets us know he's done! Then he usually passes out for a lengthy nap!
The paperwork to get him in the classroom is complicated. Basically all of his medical stuff has to be written out on paper and signed off by his doctor. He also has to have a nurse in class. Its taken me a while to find someone that I trust to be Jax only caregiver, with me not around! I think I finally found that someone! I want to make sure she's good and comfortable, and knows Jax different mannerism's before she goes to school with him. When he finally goes I will go the first day and just stand on the sidelines, letting the nurse do everything. I just want to make sure she, and his teacher know when he's telling them he's done, and what signs to look for!
Of course sending him to school won't be easy! Its never easy to let our kids go, but especially when the child depends on your for even the most basic needs. But it will be good for him, and he will benefit greatly!!
Right now his teacher comes out two days a week. She puts him in his chair and does activities with lights and music. She does a lot of stuff with his hands. For the first time he's doing school projects that every other kid does in school! The first time his teacher showed me a project I just cried! It will be something I will treasure forever!
Its so amazing what those little fingers can do! Even though he hates it, major sensory overload!
And by the end of the hour, he's letting us know he's done!
My baby is doing amazing things! Pretty soon I'll be posting him getting on a school bus! Man that will be a post you'll want to read with a box of tissues!
Posted by Lacey at 8:41 PM
Thursday, October 3, 2013
I seem to be going through a "tired of being a medical mommy" spell! I would love to go a month, even a week with no medical worries! I'm tired of doctors offices. Hospitals, Pharmacies and insurance companies! After opening a 4500 bill for ha IPV machine was when I lost it! I realized that a long as I have my beautiful boy, I'll never have good credit, I'll never be able to buy a house. We'll be throwing money away as long as we live this medical life. And it's just not fair! Our government is acting like two year olds all the while still getting a big salary while everyone else suffers! I'm not all that proud to be an American right now!
Posted by Lacey at 3:05 PM
Thursday, September 26, 2013
What has happened to my itty bitty baby girl?
She's turned into a big, beautiful 4 year old, that's what!
I'm still in awe of the fact that I'm able to raise this beautiful girl and call her my own. What a long, hard process it was to bring her home!
But I can't believe how big she's getting. Having a little girl has been everything I ever dreamed it would be! The bows, the princesses, the pink! Its all amazing!
These pictures from our last couple trips to Disney has made me realize how grown up she is! We've been taking her leash with us to Disneyland. Its much easier when she gets out of her stroller. But she wanted to stay out and walk with her cousin the other day. And guess what? She walked through the entire park! Without dropping, without pulling. She walked like a big girl!
Our princess is making some big strides in preschool! She gets two more years here with the same teacher because she just misses the deadline. I love that because she really does well with this teacher, and I think when its time to go to kindergarten, she'll be ready!
(warning: mommy talk coming!)
She's also getting closer to potty training! She's pooped in the potty a couple times, which is usually the hardest part! Still working on her telling us she needs to go, but its progress!
I love love love my baby girl so much! I can't wait to see our future. Shopping together and talking about boys!
Ah I love little girls!
(by the way, I have no idea why my computer won't let me make my last three pictures bigger! Let me just say that windows 8 makes me want to throw my computer through a brick wall! )
Posted by Lacey at 9:57 AM
Friday, September 20, 2013
It was the blog heard round the disabled communities world!
Posted by Lacey at 10:16 AM
Wednesday, September 18, 2013
Saturday night we were at Disneyland. We were eating at Naples pizza in downtown Disney. Me, Ray, Carter and the two littles.
Eating dinner out with Jax is not always fun. People think that suctioning him is gross. We try to turn him away from people, or pull his canopy down when we suction him. I always suction him good before we go in hoping that he will be good during dinner.
There was an older couple sitting across from Ray. They had an adult daughter with them. I did notice them glance over a few times while we were eating. I always just assume they are staring at Jax or disgusted by the suctioning.
Unfortunately its just something that we've gotten used to, its our life with Jax.
Our waitress wasn't that great, and while we sat and waited for her to bring our check, Arina was getting antsy! So I took her out and got her settled in her stroller.
A few minutes later Ray walked out with tears in his eyes. He told me that the couple sitting across from him had paid for our dinner! They left before we did, so we couldn't thank them. It was just an anonymous act of kindness.
I'll admit that I've become hardened a bit in my years with Jax. The acts of kindness are few and far between the nasty comments and hardened stares. But they are also so amazing that it softens my heart and gets me through to the next act of kindness or sweet comment I get.
When people say children like Jax are just a burden on us, that we'll be caring for them our entire lives and they won't contribute to society, it makes me angry.
Don't you see? Don't you see the way they contribute?
They bring out the best in people. They make them stop and remember how lucky they are. Their infectious smiles can brighten anyone's bad day.
And I think that's what we need a lot more of in this world. Smiles, and acts of kindness!
So take this story and remember to pay it forward. I know we will!!
Posted by Lacey at 12:00 PM