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!




21 comments:

Becca said...

I've been thinking of Jax a lot - hope you can get some answers and get that little guy well!!

Arina's got the most beautiful smile!! What a beautiful little princess. Can't wait to see the courtesy laugh... :-)

Alaina and Kyle said...

Hoping Jax heals quick and I LOVE the new pictures of Arina!! She's got quite the personality!

Rochelle said...

Praying for you sweet Jax, hope the appt goes well. And my oh my I think that littlest Ruggrat is getting cuter by the minute! Can't wait for video of her.

Scrappy quilter said...

She is a little cutie. Hope you can get things resolved for Jax. Poor little man. Praying here. Hugs

Cammie Heflin said...

She is adorable! I hope you get some answers about Jax, how frustrating!

The VW's said...

What a little honey! She is just precious!

Praying for Jax! Hope his bone heals quickly and he isn't in much pain! Give your sweet boy a hug from me and Gavin. Love and Big Hugs!!

Chromosomally Enhanced said...

Arina's is a doll!! what a RocKsTar standing up with mickey!! I am sending good vibes to Jax...I just want to reach through the screen and cuddle him...hugs to you all..smiles

Kristin said...

Arina - way to go!!! We worked on standing for months and months with Max. But he's walking with his walker toys more and more! You better not walk before him - haha. It would be awesome if you did though, show off ;)

Melissa M said...

I loved all your Christmas pics! Claire was more interested in wrapping paper than any present she got!

I hope you get some answers about Jax at your appt. Is he on steroids? I was on very high dose steroids for years for my asthma and had osteoperosis when I was 10-12. It reversed once I came off them as far as I know...

Jessica said...

I know you mentioned a few of the supplements that Jax is on - but don't forget about phosphorous. It works with calcium to help keep levels where they should be. A lot of the premature babies I take care of end up needing these supplements, and we usually have to give phos along with calcium to help balance everything out.

Hope his leg continues to get better!

Anonymous said...

i hope jax heals quickly!! another possible reason for the osteo might be jax non-weight bearing status. from what i'm told by PTs that i work with (i'm a special ed teacher to children who are medically fragile/severely disabled), weight bearing (even using a stander) helps to build bone density. children/adults who do not stand often have weaker bones, regardless of how much calcium or diet considerations. it definately sucks!

that little arina must be such a delight! she's adorable and you can tell she's fallen right into step in her new life! i love that she's got jax trying new things!

thanks for sharing your beauties with the world!

Patti said...

Oh, could you get any cuter?? She is adorable!! We will be praying for Jax!

Alison said...

I hope Jaxson's leg is feeling better soon. It is great seeing Arina blossom. Can't wait to see her first steps.

Michelle said...

Arina is so so beautiful! Look how she is just blossoming by being in a loving family home!

Continued prayers for Jax!

Heather said...

Oh, my. I still can't get over those blue eyes! She's a baby doll in every way, and I just love how expressive she is!

Junior said...

Lots of prayers for Jax. Arina is soooo adorable, those pics of her with Mickey made me laugh.

Tina said...

Praying for Jax, I can't believe he has to go through this, this little boy needs a break. I hope he gets some relief soon. Hope your talk with the fracture clinic brings some answers.

I have no words as far as your other Rugg-rat is concerned, she bowls me over with each post, she is changing so much everyday, looks so healthy, so happy. And has her hair grown or what? Already seems longer. She is such a beauty and you have changed her life forever, just can't think about what life would have been for her otherwise. She has such beautiful eyes and smile. Can't get enough of her, can't wait to see the courtesy laugh...don't keep us waiting!!

heather said...

Oh my heavens! Check out that cute little show off! She looks so adorable doing her standin' thing!

Hoping you get some answers for Jax soon!

ANewKindOfPerfect said...

Sweet Jaxson, I hope that your leg feels better soon. I hope that the ortho puts a hard cast on so it's easier for you and Mama to keep you comfy. ((hugs))

Arina, what can I say? You blow my mind! :)

G-Zell said...

Praying for Jax.

Your daughter is just precious! Very cute pics!

The Fluck Family said...

even if his calcium levels were fine, the fact that he can't really "exercise" would take a toll on his bones. you need weight bearing exercises to build done strength which is why women are told to weight lift - to help combat osteoporosis. poor mr. jax...i know a lot of people wish there was something they could do for him. :(