Thursday, December 30, 2010

Water baby

Ok, let me set the stage here.
Last night Mondo was playing with a squirt bottle, squirting it in his mouth. He starting squirting it in Arina's mouth, and he accidentally got her in the face. She squealed with delight, and the rest is history! You can see for yourselves what happened next. A soaking wet, laughing princess!
I think we have a little water baby on our hands!

Wednesday, December 29, 2010

Lime green's a great color!

Today Jax sports a lime green cast. They left his foot out so he didn't get a pressure sore on his heal. One was already started to form from the splint. No doc seems that concerned that he fractured his femur so easily, without us even knowing how. They all say it happens on non weight-bearing kids. I'm not satisfied with that answer. I knew he was more susceptible, but not even knowing how he got it, thats crazy. I'm hoping his pain will get better now with a more supportive cast. I also wonder if part of the pain was the sore forming on his heal. I hate it because he doesn't even like to be held. I held him in my recliner last night, and he just got squirmy and fussy, so I put him back on the floor. It sucks when you can't even comfort your own baby!
I got a new camera for Christmas, and I'm not impressed with the quality. Its supposed to be such a nice small camera, 12 megapixels, but the pictures seem fuzzy to me. What do you think?

Ok Denise, here's your pic of Arina in her matching Ella outfit. Its a bit big, but we just roll up the sleeves!
I was trying new things with her hair yesterday. Its growing so fast! I think it looks pretty good for a baby that doesn't sit still, with short hair, and a mama that hasn't done girl hair in 13 years!

Tuesday, December 28, 2010

The standing girl!

Jax is doing ok. He only lays on one side, so when I put him to bed I try to lay him more on the other side. But then he tries to move his leg over, and eventually cries in pain, so I lay him back on the other side. Tomorrow I take him to the fracture clinic, and hopefully can have a nice chat with him about Jax bones.
I wanted to answer a few questions I've had from people. The first one I've gotten a lot is about Jax calcium levels and is he's on calcium. He has been on calcium almost since birth. With the heavy doses of diuretics he gets, he is on calcium, potassium, sodium, etc. He gets 600 mg of calcium a day! But that barely keeps his calcium levels normal, so he's not really getting extra calcium.
Another one is if the ketogenic diet could have made this worse? That I don't know either. I have an email in to his ketogenic dietitian, asking her. If it is, I'm going to be ticked! That would be one more thing that they failed to tell me about the diet before starting it. Yea, I didn't ask all these questions, but when your child is dying in the ICU, your brain is not functioning properly. You would do anything to save him! This diet was started as he was waking up from a medically induced coma. They told me if he survived, that this diet could be started to try and stop the seizures. But they gave us only about a 30% chance that he would survive the coma. This was the sickest he had ever been, ever!

The last question was how they had his leg casted, and if they were going to put a hard cast on. They have it splinted right now, like in the previous post pictures. In the ER paperwork, they said this type of fracture they don't usually cast, but my ped said with his fragile bones, they might to keep it more stable. I hate the splint, I would rather have a hard cast to protect it better. We'll see tomorrow.
Also, the fracture is not all the way through the bone. If I can get a good picture of it, I'll post that, its on one side, down towards his knee, so its not the kind that would typically need surgery to put back in place!

As for the other Rugg-rat, she is doing new things everyday. I look at her and can't believe she was given up simply because of an extra chromosome. She is a healthy, beautiful, baby girl! What else do you need? But thats how a lot of these kids are. If a child has one seizure at birth, they consider them special needs, and place them in orphanages!
Her new thing is the courtesy laugh. I'm going to try and get it on video, because its hilarious! She started doing it on Christmas day, when a lot of people were watching her. Oh yea, she knows how to get attention!

She also is standing against furniture. She doesn't move her feet at all when you try and walk with her, and she can't pull herself up yet, but she is standing! It would be funny if she walked soon, she's only the size of a 6 month old, so seeing her walk would be a crack up!
Look, its my good friend Mickey!

Sunday, December 26, 2010

The day after

We had a great Christmas. The boys got just about everything they wanted, and Arina got to experience Christmas for the first time.
Santa brought Arina a jumper, to practice her standing skills. She loves it!

She loved ripping wrapping paper off presents!

Tanner got his drums he wanted. Yes, the autistic child got the noisiest gift!

But it wasn't his favorite. Out of everything, the Big Time Rush CD made him totally freak out. He told me he wants to go to Hollywood. He thinks if he goes there, he'll just see them on the street. Because mom, that's where they live!

Arina was again the hit of the day. She was passed around to all her cousins.

The cutest was she had a little playmate. A cousins little girl, she is 10 months old. They were enthralled with each other.

And Italie helped Arina practice her standing skills!

Now to the bummer part of Christmas. I hate it when there's a bummer part.
On Christmas eve, at my moms house, I noticed that Jax was acting strange. Every time I would touch his right leg, he would jump and wince. When we left, he freaked when I put him in his car seat, and screamed the whole way home. I decided to take him to the ER. I took Mondo with me to help, and daddy stayed home to get the little ones to bed. We were there until 3:00 in the morning! They were soo slow. I figured it was his hip. I have been told Jax is especially prone because he bears no weight on his legs. They x-rayed his whole leg and pelvis. Then we waited some more. He came in and told me he had a buckle fracture in his femur!
I freaked out. How does a child that can't even sit up, fracture his femur? The doc told me his bone density is not like a normal person, and he could have done it rolling around, or getting him out of his car seat. They splinted his leg, and I have to take him in to the ortho on Wednesday. I read his x-ray report when I got home, because I can look at all of Jax medical records online. It said under the diagnosis, "severe osteoporosis", and "buckle fracture of distal femur". How the hell does a five year old have severe osteoporosis? This really upsets me. It makes me want to grab God by the shoulders and shake him, look him in the eyes and ask... how is this fair? How is it fair to give one child EVERYTHING? I don't want to hear that everyone has a plan. Just don't want to hear it anymore. Sorry, this really gets a person worn down after 5 years. Why does this child have to spend his life in pain?
You can say what you want, if your comment is nasty, I'll just click the delete button. Walk a mile in my shoes first. Walk a mile in Jax shoes, before you judge.
I called the ER yesterday, because even with the splint, he is in obvious pain. He just doesn't understand. So every time he moves, he winces. They wrote for something stronger than tylenol, and my baby spent his Christmas in pain.

He slept late, because we didn't even get him in bed until around 3:30. I don't want to move him around much, but we did open a few presents.

Changing his diaper, and getting him dressed, is no fun at all. He hates his car seat, it causes pain, so he screams the whole time. Its utter hell.
Sorry for the bummer Christmas post, welcome to Jax life!

Friday, December 24, 2010

MERRY CHRISTMAS from two uncooperative elves!!

Thursday, December 23, 2010

Denise that just left me a comment saying your son just got a trach, email me.!

Wednesday, December 22, 2010

The great teacher!

During a random momma photoshoot, I see it.
A Ukrainian princess....

Loves, loves, loves her big brother.

A big brother returns the feelings.

A princess forces her brother to work, to follow her....

He rolls to find her...

And he won't be outdone in the head control department.

Who needs therapists when you have a princess?!