Monday, February 28, 2011

Pulmonology and safe kids!

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

Sunday, February 27, 2011

I pad giveaway

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!

Saturday, February 26, 2011

It never gets any easier!

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!

Friday, February 25, 2011

Happy Friday

Yeah for the weekend!
Happy Friday from the princess!!

Thursday, February 24, 2011

Giveaways for another princess!

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!

Grab This!

Lots going on at our house. Lots of things to stress about. I'm beginning to think I have ADD. I have been home all week, no appointments, but still nothing gets done around my house. I wander from room to room, seeing everything that needs to be done, but not able to focus on one thing. Its making me crazy!
Arina is doing fantastic, of course. Her early intervention therapist thinks she's very motivated. You know how our DS kids can get comfy doing just what they can at the time. And we all know how stubborn they are! But Arina wants to move, and she wants to do new things, and she is learning like crazy! Now if we can only get her to use those little hands. We clap with her constantly, and she puts her hands up like she wants to, but won't put them together! Such a stinker!

Jaxson is Jaxson! We finally have our pulmo appointment on Monday. We plan to have the nice long chat with her like we did our ped. I plan on picking her brain, a lot! I am hopeful with the cardiologists I'm finding in Cali. I am hoping we can get a PPO for our insurance, so we aren't confined to certain doctors. There are so many different places in SoCal that we can go to. I do worry that they will tell me that all this stuff is wrong that doctors here have been ignoring. But thats the whole reason we are going elsewhere.
I have been seeing new seizures lately as well, multiple times a day. We go back to neuro next week, and he is going to have another EEG. Its been a long time since he's had one, because every time I ask, they tell me that he has lots of seizure activity, so why do we need another one. I'm not sure it will tell us a whole lot, because its so bad. Another place I can't wait to go to, UCLA's seizure clinic. I know they do a bunch of tests that Jax has never had. Hopefully they can help him as well.

We have also been busy getting Carter ready for his new superleague baseball team. I'm super excited for him, but bummed that he finally gets a good team, and he will only play for one season before leaving. Bad timing I guess!
Its going to be a busy spring with daddy not around much, lots of baseball, trying to sell a house, etc. Daddy will still have most Fridays off, so there will be times that he will fly home Thursday night for the weekend. All of Carters games are on Saturdays, so he will try to be here for as many as he can. I'm getting heart palpitations just thinking about it all!

Tuesday, February 22, 2011

*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??

Sunday, February 20, 2011

I thought you needed a good cry today!

Why do we work so hard to keep Jaxson alive?
Why do we have so many machines?

So many lifelines?

First it was this a couple months ago...

This was taken yesterday. Jax therapist is the other voice you hear in the video.
Look at him!
Look at my little man go!

If you don't know what we are looking at, he is purposefully grabbing and using his hands for the first time!

This is the child they said would do nothing.
This is why we fight so much with the doctors.
This boy has big plans.
He has new skills to develop!
He has forts to build!

He has a life to live!

(thanks buddy Gavin for the great toy that is so easy to grab!)

Friday, February 18, 2011

Big news and some new friends!

Yesterday we finally made it to a playdate! The first time we didn't have appointments, therapies, or sickies that prevented us from going. We met a bunch of people that we didn't even know yet. I can't believe how many DS families there are so close to us. Of course I forgot my camera, so Kristen sent me some pics.
This one is so cute!

Arina's first time with a big group of kids!

Look how sweet they all are. A pretty good pic of so many kids, considering we were trying to get them all to sit still for 30 seconds!

We have some big news in our house!
It looks like daddy is going to be able to transfer to California!!
I've never been so terrified and excited at the same time. Don't get me wrong, I know its the right thing for our family, and I'm definitely excited. But moving Jax so far is not going to be a small feat! HR sent us the 3 insurance companies that they offer in California. Of course I don't know any of them! I need to look into them very closely to find the one that will cover all of Jax needs. I need one that has not only good deductibles and low out of pocket max (Because Jax will definitely hit that!) but also one that has doctors and hospitals we need, and good homecare service to get all of Jax equipment. Oh man is this going to be daunting. But when its all said and done, it will be a far better place for him. Much lower altitude, and the ocean air will help his severely damaged lungs so much! Not to mention better childrens hospital's.

If we can keep our insurance here until we are all moved, then Ray will go down mid March, and I will stay here with the boys until they get out of school for the summer. Also I need to stay to sell the house. Hopefully it sells by then. I'm not sure of the market here right now. But I don't think its too terrible. I am a little worried about being a single mom for 4 months or so, but I have older boys that can help out a lot. Daddy will still have most Fridays off, so there will be times that he can fly home on Thursday night, and stay until Sunday. And of course we'll go down and visit him as well!
The boys are very excited. They have some good friends in California, and Mondo's "girlfriend" is there as well. I'm excited because I've lived in the same city my whole life, and I'm ready for a change. I'm worried about leaving my mom, only because when we leave, all of her grandkids will be out of state. We will be able to come back often to visit though.
Wish us luck on our tasks the next few months. Mainly finding a fantastic pediatrician, oh how I'm going to miss her the most. She has family close to were we will be living, can't she just move with us?? She has been through so much with us and Jax. She was my counselor when our family was struggling with life, when Jax was so sick. I've sobbed to her when we thought we were going to lose him. I consider her a close friend, and I'm really going to have a hard time leaving her!

Wednesday, February 16, 2011

3 months home

Our princess has been home for 3 months, and she is doing fantastic! She is such a spitfire! There's nothing this girl won't try!

We make sure her home country is in our home, and we will be totally open with her on where she came from, and everything she wants to know about her birth place. There are a few words that we still say in Russian, that the boys have picked up and now we say them regularly. We probably always will. Like yes, no, thank you, bye bye, we say in Russian now. She has an American and Ukrainian flag in her room. Along with some Ukraine money daddy saved for her.

Of course she has her little Ukraine dolls on her dresser as well!

You noticed from the last post her dry face. We know that is a DS thing, Jax gets it too, especially in the winter. Hers has been particularly bad the last couple of weeks, and I think I know why.
See that beautiful spit hanging from her lip?

She is slobbering like crazy right now. It looks like she is getting both bottom teeth pushing through, and I think that is why she is so drippy! I don't like the thick creams for excema, especially on the face. The hospital always has their concoctions that they mix and think is so great, but I like plain old aquaphor by Eucerin. It really makes it better, and I can put it on their face and even lips.
She is healthy, and she learns so quickly I can't even believe it. Some things she has already learned since being home..she can now push herself up to sitting from her belly. She is a pro at that. She has pulled herself to standing, and after one time showing her, she holds her bottle herself.
I'm trying to get her off the bottle and on a cup. I'm also trying to get her to eat more food and need less milk, so milk isn't her primary nutrition anymore. I don't think that will be difficult, she eats anything you put in front of her. Its the cup I'm worried about, and this is where I need advice.
I've given her the cup a few times. I usually do it while she is eating baby food. Give her a few bites, and then let her take a drink. She knows how to suck out of the cup, she has a great suck. Its just different, and sometimes she will drink some, and then let it dribble out of her mouth. Its so funny because the milk tastes the same! I'm also trying to get her off the need to have her milk warmed. She'll take it lukewarm now, but she still won't drink it cold!
This is the cup I use. Its one that I got at her shower.

I can't wait for her to go to preschool, because she loves to learn. I may try to find a baby class for her to participate in. I want to get some Signing Time videos for her and get started on signing. Her fine motor skills are really lacking. She won't wave or clap or do anything with her hands besides play with toys.
She loves her piggies, and one of my favorite things is how she crosses her feet when she sits!

I get a lot of comments on her when we go out. I get a ton of comments on her beautiful blue eyes. But she is so social and interactive, that she lures people to her. I've only gotten postitive feedback so far on her adoption from a foreign country. Most people gasp when they hear that she would have gone to an institution in a few years!
She is just an amazing little person!

Oh and of course momma is having a ball playing with her hair and dressing her up!

*by the way, I'm answering all your questions in the Q&A tab!

Monday, February 14, 2011

Happy Heart day!

Happy Valentines day to all of our friends and family!

Today and all month please remember our heart defect survivors and angels! Love my Jaxson, CHD survivor and warrior. Especially our dear friend Libby, as we near her anniversary of earning her angel wings. Her mommy started a blog, please go and support this mommy and read dear memories of her CHD angel!