Last night I found the princess playing with these...
Hey, I didn't wait 13 years for a girl to have her play with army men!
But this is all we've had in our home for 12 years. We are working on building up our girl toy supply. She doesn't really understand babies yet, we're working on it.
For now, I'm going to hide the boy toys!!
Jax had his long awaited pulmo appointment today. It was very productive and not so productive at the same time! I know that sounds weird. I wanted her honest opinion since she had told me before that she thought his clotted off veins were causing major problems for his heart. My ped had told me that cardio had talked her into the aspiration theory. She, like me, still does not believe him aspirating is the major problem. She brought up a good point. If he was constantly aspirating enough to be damaging, he would be getting frequent pneumonia's. This is one reason she doesn't think the vest would do him much good. She doesn't have any more idea's on how to help his lungs, she has done everything she knows to do.
When I told her about the move to California, she did think the altitude would help his lungs. She said I would see his oxygen need go down. I told her that when we go there, his oxygen need usually stays the same. She said that was another clue that his heart is the problem. If it was only his lungs, his oxygen need should be better at sea level.
I found a good cardio at Childrens hospital Los Angeles, and just tonight found a team at UCLA that is working on clots in the pulmonary vascular system!! Bingo, thats exactly what his problem is, so I'm going to be giving them a call tomorrow!
So the appointment was good because I know pulmo is still on the same page as me, but not productive in that she doesn't know what else to do for him. She says "he's on the vent for crying out loud, I'm not sure what else we can do!"
She thinks he looks good, and I agree that he has been a good boy this winter. Its almost creepy that we haven't had a single cold in the house! Not even my other asthmatic's have been sick. Its so weird...good....but weird!
Saturday we took the boys to the safe kids fair. We are all getting stir crazy being stuck in the house all the time. It was free, which is appealing since we are impatiently waiting for our tax money to come and rebound us from Arina's adoption!
Its nice because it teaches the kids all about safety. Fire safety, bike safety, and best of all, Iron Man was there. We had to stand in line for a picture because Tanner was dying to see him.
The crash test dummies!
Although there wasn't much for her to do, Arina was pretty good the whole time!
Teaching the kids bike safety.
Tanners beloved Iron Man. We couldn't get Arina to look at the camera, she was intrigued by the big red man!
Tanner and Carter being firemen! They were so fast that they were just a blur!
Trying out the police motorcycles
Marissa's Bunny is giving away a free I pads for special needs kids.
Marissa is a beautiful little girl that suffers from infantile spasms. Her daddy is giving away 5 I pads, all you have to do is send them an email saying why your child would benefit from the I pad.
This is a great giveaway, and it comes at a great time for Jax. Now that he is grabbing with his hands, we are wanting to get him a switch and an I pad to help him communicate with us.
Go check it out!
I'll never understand it. Never understand why a child is allowed to die so young. How is that fair? As I watch so many friends lose their children, I just want to scream!
Our beautiful friend Maggie has lost her battle with mito tonight!
My little blond beauty with her famous "scowl face" she always gave me!
No more pain for our little friend, only pain for her family and friends, as we all try and go on without her.
Love you Michelle, thank you for sharing a friendship, many emails, and chats. And know that we are all praying for your family tonight!
Another princess has no idea that soon she won't have to live in an orphanage anymore!
Dariya is being adopted by our sweet friend Alaina's family, and she is in Arina's same orphanage! I'm so excited for them to go to this city, and a little jealous at the same time! As scary as it was, I miss that country!
They are giving away a bunch of stuff, including an I pad, so go to their blog and check it out, and make a donation today!
*Auntie Boo, don't read this post, neither of us needs any more free food!*
Good Morning from the Rugg-rats!
Its freezing here, after having near 60 temps last week. I hate the early spring ups and downs.
How can something be so great and so hard at the same time?
I'm so excited to move, we've been wanting this move since we got married 13 years ago. But on the other hand, there are some people I just can't bear to leave!
You know who that it....Auntie Boo.
Let me give you a little history on Auntie Boo. Her name is Belinda, she was actually my dance teacher! I've known her since I was 13. I danced with her all through high school. We went on trips together, dance camps, and that's how Boo came along. That was what we called her. I continued to dance with her after I got married. I actually competed when I was 7 months pregnant with Mondo!
We bumped into each other in the hospital when Jax had just been admitted for his long stay. Her son was recovering from surgery, and that's when she met Jax for the first time. She continued to come up and see Jax, and started staying up there with him if we couldn't be there. She stayed overnight with him when we were exhausted and needed sleep.
(I have no idea why these pics are so small. They won't get bigger)
They developed a special bond, she is his beloved Auntie. She knows almost as much about his medical history as me. She took him while we were in Ukraine. He earned an ambulance trip to the ER during his visit.
How can I take Jaxson away from his Auntie? She left me a message on facebook that had me crying in my food at a restaurant on Saturday!
Her hubby had a job interview in Cali last week, I can only pray that he gets that job!
In every other way this move is the best thing for Jax!
How can something be so great and so hard at the same time??
