Friends, things are not going well with my mom. She has bacterial meningitis. She is intubated and sedated. Because they are sedating her its hard to see her mental status. If they turn the sedation off, she gets agitated, but tonight she wasn't even responding to pain. So her nurse is turning down the propofol to try and find a happy medium. A CT today showed infection in her sinuses. She is on such heavy duty antibiotics that pregnant women cannot take care of her. I don't know that much about meningitis, but I know this is a severe case, and the situation is critical. I'm not in Utah yet, I had to get oxygen taken care of with Jax today, and we leave first thing in the morning. I'm holding on to the facts that my knowledge has taught me. If she can beat this infection, we can work on the neuro stuff in rehab. She may not be back to normal, but thats ok. Her other organs are not showing signs of failure. So that is a good sign that her body isn't shutting down.
But I'm scared. Actually I'm scared shitless!
My mom is only 55, she's still a baby! She's never had any medical problems, except for a recent hysterectomy, and she's a new diabetic. Now she's fighting for her life, and the doctors are being very cautious about her outcome.
To try and leave this post on a good note, and because I can use the laughs. Heres a couple videos of my super silly princess.
The first is the discovery of seeing herself on camera. The second is her Gangham style dance moves!

All about Jax

I climbed into bed around 10:30. Not too shabby! I was able to get through Jax night routine pretty quickly! Meds, treatments,  feeds, respiratory junk. Jax was quickly asleep a little after 10, his normal time. Arina had long been asleep, her bedtime being 8 o'clock.
As I'm laying in bed, listening to the hum of the concentrator, and the steady swoosh of breaths the ventilator pushes into his lungs, I hear another sound. This sound is like a burping. I fly out of my bed and into Jax room, because I know what that sound is. The sound of retching and vomiting. When Jax vomits on his ventilator, he has a much higher risk of aspirating, as the ventilator pushes it right down into his lungs. I suction his trach and his mouth, trying to get all the bile out so he doesn't aspirate. He falls right back to sleep, his heartrate much higher, his face more pale, he is exhausted from that episode. As I climb back into bed, my radar still out for the sounds of more vomiting, I start thinking of all the little things Jax goes through on a daily basis, that we don't even think about anymore.
When Jax vomits, he can't take a drink of water and rinse his mouth out. Sometimes I will squirt a little water from a syringe in there. But he has such a high aspiration risk, that I need to be super careful about that. I try the sponges, and I brush his teeth. But both of those are hard as well because he HATES having anything in his mouth, and he fights it like crazy! Can you imagine vomiting, or refluxing up and not being able to rinse your mouth out? Yuck!
Jax doesn't get feeds into his stomach, because of his reflux. His feeds go straight into his bowel. That means that Jax stomach is never full, he is always feeling hunger. He has never been one that fusses when hungry. But I can't imagine always having an empty stomach. Always feeling like you need to eat something.
Such small, seemingly stupid things. But things he goes through on daily basis besides the normal, big stuff.
He is such an amazing little person! How was I so lucky to be chosen to take care of this warrior boy?

I am starting a Facebook page for Jax. I was reminded by a friend that its about time, especially with a little sister who is feisty, and can take the spotlight from her big brother. This all started with Jax, and the Facebook page will be all Jax, all the time. Pictures, medical updates, you name it. It will be much easier to update there quickly if we need to. The blog will stay of course, the page will just be a faster way to get a Jax fix!
http://www.facebook.com/Jaxsonsfight. Here is the link to his new page. Go "like" it so you can get on the go Jax!

We will probably be making a trip up to Utah either tomorrow or Tuesday. Its been a rough weekend, and I'm ready to let 2012 bite the dust! My mom is currently in shock trauma, and they have no idea whats wrong. She is unresponsive besides opening her eyes, but her head CT was normal. Its making me crazy that I can't talk to the doctor myself and get the medical info that my dad can't understand! Please pray that she is ok, and its nothing life threatening, I'm so worried! Also Ray's best friend and the best man at my wedding took his own life last Sunday. Ray will probably be flying up to Washington Friday for his funeral, and I will be traveling alone with the kids to Utah. Prayers are definitely appreciated this week!! Thank you friends for everything you do for us!!

I hope everyone had a great Christmas! Ours was good. As good as it can be being the second year away from family. Rays work has said that no one can take vacation time at Christmas. To which we say, uh, ya we will! With both of our families out of state, there are going to be Christmas's that we go away! Whether they like it or not. Hopfully next Christmas he will no longer even be with this company. Fingers crossed!

Since we don't have any family close, we took the kids to a movie. We went and saw Monsters Inc, one of my favorite Disney movies, re-released in theaters! Arina has never seen it, and she didn't move the entire movie! As crazy as this girl is, if you put a favorite movie on for her, its a sure way to keep her in one place!! This is definitely a movie we will add to our Disney collection!

We didn't get a whole lot of pictures Christmas morning. As soon as the opening began, the camera got set down and forgotten!
What is that I see?

Wow, a kitchen like mommy's!

Mickey guards the presents under the tree!

Coffee anyone?

Mondo spent the day putting together multiple, complicated lego sets!

Cinderella and her dolly!

The great Santa picture!

Since we've been a little behind getting ready for Christmas, we didn't get our Santa pic until yesterday! I'm glad we got it, because I think Jax is coming down with something. He is oozing junk, and although he does great on his vent, off his sats are mediocre and he coughs and coughs. Usually that means his airway is collapsing, making him cough. He tends to have a super long "dormant" period before he gets really sick, so I'm hoping we can make it through Christmas!

Pictures are not fun anymore with Arina. That girl doesn't sit still for 5 seconds, and I usually get frustrated and just say forget it! Jax is also not fun, although he is so photogenic, he doesn't look at the camera, his hands are always in his face, and he can't hold his head up. Its a complete disaster trying to take his picture.
So of course I was a little concerned about getting a good Santa picture. But thanks to our amazing photographer dad, that can snap in super speed, the very first picture is actually great! Then it all goes downhill from there!

Lift me up big guy!

Ta da! A decent picture! Although Jax eyes are about closed, this is as good as it gets!

Then Arina tries to climb down, I lift her back up

Jax hands are in his face

Then he loses his head control completely, and Arina spots the train and is signing "train"

There is about 30 more pics like these last three. This all happened in literally about 30 seconds! Super speed I tell you!
Merry Christmas to all of our friends, Love Jax and Arina!!

Ignorance

Yesterday I took Jax to meet a new ped, whom I loved and I think she'll be what we have been looking for!
Anyway, getting in the elevator came a mom and her son, ten or eleven years old. He wouldn't get in the elevator. He didn't want to get in with Jax. He said he was "gross." The mom coaxed him in, shushing him and whispering, that's not nice. She even tried changing the subject to homework. Never did she make him apologize to me for what her son said.

This could have been a teaching moment. I know that, after all I teach all day, every day! I'm constantly teaching people of all ages about Jax, and that he's just a little boy!
But yesterday, I wasn't a teacher. I was a mom. A mom so upset by the constant stares and nasty remarks from people. I just broke, I couldn't do it that day. All I could do that day was be the better person and just keep my mouth shut! Because believe me, I had a few choice words for not only the kid, (who was definitely old enough to know better!) but his mother, who obviously hasn't taught her son any kind of manners!
I missed it, I missed a teaching moment. But I am only human, and I can only take so much!

So as I put my angel to bed last night, I just kissed those beautiful cheeks and apologized to him for this world we live in. And thanked God that he doesn't understand any of it. I take that burden from him, because I can handle it.
Most of the time.

Tis the season for giving!

This post is about the two most unpopular topics it seems by blog clicks and comments. The blankie project and Jax medical updates! If you ever have any questions or need me to be more laymen with Jax medical updates, don't hesitate to ask!
First Jax. His retching and vomiting is slowly getting worse. I think his nissen is slowly opening up more and more, and he's refluxing like crazy! We went to a new GI on Friday, and she was AMAZING! I'm so glad! She didn't talk down to me, and she listened to everything I had to say. The one thing that bothered me, but that every doctor does, is being so afraid to do anything to Jax! This doc is even afraid to scope him again, even after I told her he'd be fine! So for right now she wants to check the PH in his stomach acid and his oral secretions. Athough I'm not sure that will tell us much. Next step after that would be the scope, to check his esophagus for redness and wear from acid. Then after that would be the decision to try fixing the nissen one more time. I think if they do it open, they may be able to handle it better, both times he had it done laparoscopically  Even she was surprised they didn't do it open the second time!
Next his labs were all out of wack last time we visited the keto diet clinic. His chloride is low, which has her worried about his kidney function. She wanted him to see a nephrologist, to which I said not right now. I think I know what will fix the chloride. I don't know if its because I don't want to add one more specialist to the group, or because if we see nephrology, we'll have seen the doc for every body function. Yikes!
I just got back from the lab with Jax for follow up numbers, and it was a no go. Three pokes, no blood, and no veins. I think I'm actually going through mourning now that I've realized that I will never find a doc like Jax Utah ped! I'm so frustrated because right now I feel like I'm truly alone, that I'm managing his healthcare myself, and that is a daunting task! I email his current ped with a question, like what can I do for pressure sores on the back of his head. He sends me a few pics of some pillow. No more to offer than that. Well thanks for nothing!! I have one more Ped I'm interviewing on Thursday, and if she doesn't work, I'm literally going to go down the list of peds in my area and interview every. single. one. There has got to be a good one somewhere!!

I'm keeping my fingers busy right now with blankie requests. But I must admit, its becoming daunting because I'm doing it alone, and get very little donations. Postage is getting really expensive, and right now it costs between 5 and 6 dollars to ship a single blankie.
Its so rewarding sending the blankies to these kids. To see the pictures of their smiling faces, and get the notes from their parents!
"Her blanket arrived the day her new forever family flew in to meet her! We all opened the package together, but first they had to take pictures of her name in the address field: WARRIOR CLARA. We all love that, but it brought tears to my eyes. I'm the one who has seen her in warrior mode for three months. Thank you for that awesome acknowledgement of her fierce struggle. And thank you also for the darling GIRAFFE blanket! What a beautiful addition to her giraffe collection. She is using the blanket and it has already been through the washer! May God bless you for your generosity and kindness for my baby."

JoAnns fabric is having a sell on flannel right now. 60% off until Christmas Eve. That is a killer deal! If you would like to donate fabric, email me at laceyrugg@hotmail.com and I'll let you know what we need. And please share our facebook page so we can spread the word and get more "likes"!!

First preschool program

Thursday Arina had her preschool Christmas program. She has been in preschool since September. While its been fantastic, and she's learning new signs everyday, I was hoping I'd see more listening skills! She's going through this crazy girl faze, and its making this momma nuts!
This class is great because they sign everything as they talk. So it helps non verbal kids like our princess. She's learning signs that we don't even know. Our family needs to start studying our signs more!
The teacher sitting behind Arina is there because Arina is a runner. She always has to have her hand held when walking outside the classroom. And the teacher sits here to keep Arina sitting down. I didn't get video of Arina laying on the floor in front of her chair like she did a couple times!
Every time I have a first with Arina, I always think about the life she would have if she was still in Ukraine.
Enjoy, these videos, they are super duper cute!
Oh, and look how tiny Arina is when they all stand up!

Ok, blogger is making me crazy! The HTML is not coming up, so I can't delete the bottom video, and it keeps posting the same one. So watch the top one, when its over the next one will automatically start. There are two, and just ignore the bottom one altogether! Sheesh!!

makeover time

I feel like this blog has hit a dead end so to speak.

I'm not planning on stopping the blog, so don't worry about that! I just feel like maybe it needs some sort of makeover. I notice a lot of blogs have a lot more technology on their pages, like ways to follow. Although I have no idea how to do that, I feel like maybe that's where we are headed.
Maybe a new look and some "up to date" stuff will make us pick up some more speed. I feel like we've slowed to a creepy crawl.
If you have any advice on what we should put up, please let me know!
I've also been busy working with Jax and trying to find a good ped, and a second GI opinion. Today I hit google and I'm seriously just going to go down the list of peds and go meet them all until I find the one that I like! A new GI can fit Jax in on Friday if I can get his records sent over, which might be the problem. Getting  records is a big, long process. Keep your fingers crossed that I can get them over so we can hopefully get working on this vomitting, aspirating problem quick!

Daddys Ukrainian princess

Ray confessed something to me the other day.
He said when he first saw Arina's picture, he didn't think she was cute, and he was worried he wouldn't like her.

He said when they first walked in to the directors office in the orphanage with her, it was instant love! He said it felt the same way it did when each of the boys was born. I felt the same way! Holding her for the first time, was just like when they handed me each of my boys. She was meant to be our daughter.

Because Ray went back to Ukraine alone to get Arina, he feels a special bond to her. Every night when Arina hears daddy's car "honk" her face lights up and she runs for the front door.
Her only word is "Pa Pa", and her first sign was daddy. I think its pretty obvious that she feels the same bond!

In case you haven't noticed, I've been at a loss of words so to speak lately! Is it the time of year? Maybe, although I'm not finding myself hustling and bustling about.
Maybe its because the blog world seems a bit slow, maybe I'm in a funk, not sure.

Maybe, its because one of our DS friends is very sick. Even though I've seen many sick DS kids, and kids that have passed away lately, its been a long time since someone I feel close to is this sick. My dear friend Janet's daughter Aziza is fighting for her life today. I talk to this women on a near daily basis. Mostly about medical stuff, but that's usually how we meet these dear friends in the first place, right? She had what they think is a bowel obstruction, but its turned into a raging infection and she's septic with multi organ failure. Her belly has been left open and her intestines are swelling tremendously. I'm literally sick to my stomach! Its like I'm right back in the PICU again, only this time I can only console through a computer screen, and that really sucks!
Man I remember days of multi organ failure, plummeting BP's, and just plain scary circumstances. I remember feeling so alone, but I didn't have Facebook to read the comments from friends knowing they were praying. I feel like all I can say over and over is it SUCKS!! Please please pray for sweet Aziza! She needs them desperately right now!

Maybe its because I'm enjoying immensely my alone time with Jax during the day. Its been two years since I just had Jax in the house. He won't start school for a while because his medical paperwork and IEP are intricate and will take time. I love to just hold him and stare at his beautiful face. I love to make him smile and giggle. I love that he is reaching out with his hands more. He doesn't purposefully reach for things, he just stretches those arms out. Many times he touches my face. He has grabbed my glasses, ears, and even scratched my cheek! I never thought I would say that I loved that my son scratched my face! He doesn't understand what he's doing. When something touches his fingers he will clamp them closed for a split second. I love it! I love savoring these small things we so take for granted in our children. I love to watch him sleep! He always rolls almost to his belly when he sleeps, his cute little butt in the air! I never understand how that's comfy, smashing your trach into the carpet and making your bottom arm purple from laying on it. But he's just so sweet, and so perfect, I have to capture those moments in my brain forever!!

*Update* Sweet Aziza has passed away. My stomach is so sick that I'm feeling nauseous! It makes the above post so much more important, these pictures so much sweeter! This very reason is why Jax goes with us everywhere, why I barely let him out of my sight! I have to treasure every. single. second!!

Dare Devil!

Man I wish I could take this girl on the Tower of Terror, she would LOVE it! But since she's already little for a 3 year old, I'm guessing it will be a few more years before she can try it!