A princess pedicure!

I gave our princess her first pedicure today. As you can see, I'm not sure I would call it a success!

Not only is it taxing trying to get a rambunctious 16 month old to sit still for more than 5 seconds! Its also impossible to keep polish on the toes of a girl with an extra chromosome!
Why.... because T21 kids use their toes like and extra set of hands!

Why was I worried about not painting her fingers because she puts them in her mouth?
She does the same thing with her toes!

Oh well, it was still fun to paint toe nails of a baby girl! Instead of sitting on a boy and begging them to let you paint their piggies!!
Now I know why the boys were so excited to get a baby sister!

Right princess?

Hiding behind anonymity

I'm finding myself needing to take anonymous comments off this blog. I hate to do that, since a lot of friends don't have profiles that like to leave comments.
Heck, maybe I should disable it before I even do this post! Ha.

If you feel so strongly about something, why don't you leave your name? Either you don't feel strongly, or you are just being rude! A lot of RR families get rude anonymous comments. These I don't really care about. Its ignorance for stuff they know nothing about. I was actually on two other blogs that were dealing with rude comments just yesterday. This is the latest comment left by an anonymous person.

"they all look so sweet and innocent accept that I know Mondo is not by the way he calls you dumb a$$ and jerk on facebook."

The reason this one bothers me so much is that this person is obviously friends with me on facebook. Now I feel like I have to revamp my whole facebook, because I like that not everyone can read what you put on there. And since this person didn't leave their name, I don't want them on my facebook either. If you leave your name, than I can respond to you and not have to do a post about it.
I'll be frank. I was ticked when Mondo put dumb a$$ on his facebook. He had just gotten his facebook account, and he was reprimanded for that comment. The facebook page almost came down. I never claim my boys are "sweet and innocent" because trust me, they aren't! Mondo doesn't call me names, he was trying to be funny. If he ever said that to me, he would never see a computer, or his friends again! His response when I got mad was, the kids at school do it! Yeash! Mondo is almost a teenager, he is now in junior high, and my shy, quiet child, his hearing some pretty crazy stuff!
He is also getting into the teenage back-talking faze. As new parents of a teenager, we are learning how to tackle this and nip it in the butt now! (by the way, any advice on that would be fabulous)
Really, Mondo is a great kid. He holds the door open for everyone, and he is always quick to help. I actually get quite a few comments on how nice my kids are, and I'm very proud of that.
So this person with the perfect children, why don't you just leave me your name so I can delete you from my facebook and save me a lot of time!

Thanks Sarah for telling me how to better secure my facebook!

The baby whisperer's

If there is a baby in the room, my boys will find it!
My boys, the baby whisperer's!

Cousin Arya


New baby cousin Hailey



Baby sister Arina





And of course Jax!

Friends

Having an extremely rough morning. Sorry for the bummer posts, I promise I'll have cute pics tomorrow. But I started this blog for me, and I need your support to help carry me right now!

I will admit that I'm a Friends fanatic....ok, it may be more than a fanatic. It may be an obsession! I turn on my Friends DVD's every day. I've been told before that I have Friends tourettes syndrome. I often blurt out punch lines when it fits the situation! I like to watch them while I'm going to sleep, and they definitely are my pick me up!

So today after having long conversations of which I'm not going to go into too much detail. Don't want to bore you with more medical crap. But basically I was told the care conference wasn't to be a bitch fest, that they already know that I don't like the cardiology team.
Bawled my eyes out, thought these people knew what kind of person I am, that I'm not a monster. But kind of feeling like all my doctors are not understanding that yeah, a lot of stuff may not be worth putting Jaxson through. That I do think quality before quantity. But I want to know all my options, then we will decide as Jax parents whats best for him. Don't knock me down before I have all of my options.

Luckily the palliative care team saved the day, again!
They want to meet with us before we meet with the docs. We will get everything out on the table, and have a plan in place. I love that they can be my voice, not that I don't want to talk, or don't want to be there. But moms tend to be blubbering messes when you are talking life and death about their child. So they can help me get my words out!

So I've gone and turned on my trusty Friends. Season 7, disc two. I'll have it playing in the background while I'm folding clothes and taking care of my munchkins.
They always keep me laughing....

I feel better already!

What do you do?

What do you do when your medical team has given up on your child?

You find another medical team, because you are his biggest advocate!

I talked to my ped today. She is preparing a care conference, with pulmo, cardio, her, us, and the palliative care team. I think that is a great idea, because from what she told me today, they have given up on my baby. Pulmo said she can't do anything more for him. That this is a part of his brain injury, and it will continue on its course until it takes his little life. My ped says that we can go out of state, but what are we going to do if they tell us its his blocked veins? We can't fix that either.
So I want this care conference so I can find out if our doctors are on Jaxson's side or not!

CHOP, here we come! Although I also found out that it may not be covered under our insurance, because its a second opinion, and not something that's not offered here. I'm not sure what we'll do then, because he needs this, and you know if its not covered, its going to be thousands of dollars.

*sigh*

Seriously, does anyone else have doctors telling you to let your child go?

Keep on keepin on!

Still waiting, always waiting on doctors!
My ped now tells me she thinks he's aspirating his own secretions. We know that already, he's been doing that since he was a baby. I don't think that would bring sudden worsening of his lungs. She told me pulmo and cardio are going to talk and then let me know what they think. I've decided that we are going to CHOP no matter what! If CHOP tells us that its the aspirating, then I will believe that is the truth and we'll fix that problem. But I want them to take a good look at his heart, lungs, and his messed up vascular system. It will put this momma's heart at ease to have the best tell me there's nothing to be fixed there. Sorry Boston friends, Boston Childrens has yet to get back to me, and since we've already talked to CHOP, thats where we'll be heading. I guess you'll just have to drive to Philadelphia to see us ;)
RSV has now had some confirmed cases here, so we are getting into the heart of flu season. So more careful with Jax we have to be! I've been a little paranoid the last few days. He's been more junky, I've had to give a few doses of robinol. This morning his heart rate was high for him. 150's when he's normally in the low 100's awake. Praying this doesn't turn into anything, he can't afford that right now!

I found some pictures on the counter last night. They were pictures I had in my wallet, and dumped them on the counter when I cleaned my wallet out to go to Ukraine. I had to post them, because they are so dang cute.
Mondo looks so little! Since starting Junior high, he has grown up before my eyes!

Oh my Tanner. This was his graduation picture from his autism school, Pingree. He has tears in his eyes. Trying to get autistic children to put these clothes on and sit for a picture was quite an ordeal. I'm just glad we got a smile out of him!

This was when we first grew Carters hair out. He had bangs then. Some people like the bangs, I think they make him look more like a girl!

Best of all, baby Jaxson. This first one he's about 2 months old. I need to find my angel pic of him that was taken at the same time!

These last two were taken when he was about 9 months old. It was right after he got out of the hospital from his long stay. He was really weak so we had to prop him with his hands.
Look at that wild hair!

All about the princess!

! Anyone that knows how to make a header using pictures and images, please email me. I usually pay to have it done, and have no idea how to do it!

Our princess Arina has been home for a little over two months now, and I thought I would update how she is doing.
First off though, I have fallen in love again. I really need to stay off Reece's Rainbow right now! This is beautiful Lilly. She makes me so sad. Her sad eyes, and her signature bump on her head from banging on crib rails. You can tell just by looking at her that she has unrepaired heart defects, which it says in her profile. I want her! It makes me crazy when they are in dire need of heart surgery and can't get it. Unfortunately Arina's adoption has drained us dry, and we need to replenish before we do it one more time. But she doesn't have time! She is also in a region that is a little more expensive than Arina's region, and we aren't familiar with the area like we would be with another Ukrainian child.
But I want her! (click on her picture to read her profile)

Ok, on to our own princess. She is doing fantastic!! You can see that her hair is growing like crazy! Of course thats a good thing for me!
She is 16 months old, and just under 16 lbs. She where's 6-9 month clothes, She is itty bitty! She isn't even on the DS scale yet, especially for her height. She is just good, old fashioned short!

She explores more and more every day. She still is very easily startled. If a dog barks, or even my newborn niece crying, scares her and makes her cry!
The kitty is her new favorite toy. She grabs her fur and tries to kiss her. Luckily the kitty is very easy going!

One area that Arina excels in is eating. She doesn't have any of the feeding problems typical with DS kids, like textures and solids. This girl will eat anything. My ped told me not to give her table food until she can pick food up with her fingers. But of course we cheat, and she eats them just fine! No choking there either. I think her aspirating is not as bad, because she doesn't sound like she's choking anymore when she eats. She still is on oxygen at night because of her apnea, and her tonsils and adnoids come out Feb. 3, along with an ABR hearing test.

She is one strong little bugger! She will be on her belly, and push up onto her feet and hands, like a spider walk. Although she can't move like that. She had a hold of Jax oxygen tubing the other day, and I had to use both hands to pry her hand off! She is now starting to push herself up to sitting from laying down. She gets on her hands and knee's, but can't figure out how to move herself. So she gets around by pulling with her hands and pushing with her toes. She also will stand against stuff, but again, she doesn't have the coordination yet to move her feet.

So this is usually what happens!

Oops, that was quite traumatic!

One thing she is really lacking in is fine motor skills. Because she spent her life in an orphanage, she doesn't do pattycake, wave bye bye, or any of those things. She won't pick up food and put it in her mouth, although she is now putting toys in her mouth, so I assume food is next up.
I want to buy her some signing time videos and get started with those with her. The other day I put her hands up to hold her bottle, and she did it! Now I'd like to start with cups, to get her off the bottle. So any advice in that area would be appreciated! She won't suck through a straw. She did the first week we had her home, she actually was able to suck juice up out of my straw. Now she won't even attempt it. She doesn't like the straw in her mouth.

Of course the biggest thing is how much joy she has brought to us and especially her big brothers. And I know we have brought joy to her, and saved her from a life inside an institution. Oh how we love our princess Arina!

Buzz jammies are back

Look!
A special Rugg-rat can finally wear his favorite Buzz Lightyear jammies again!

A pick-me-up

Needed a little pick me up tonight. Fighting for your child's life is certainly draining!!

Make photo slide shows at www.OneTrueMedia.com

Make an on-line slideshow at www.OneTrueMedia.com

Still working on the tabs at the top of my blog. One day, they'll be done....hopefully!
Also going to change my header a bit. Trying to find a good title that still includes Jaxson's fight. Remember, I'm not all that creative!

This is an update post on all the boring stuff. The princess had her follow-up ENT appointment after failing her sleep study. She is having her tonsils and adnoids removed Thursday, Feb. 3. She'll stay at least overnight, longer if she refuses to drink! (I forget what a life saver the g-tube can be!)

Jaxson, of course, is a lot more complicated! After I posted that we were going to admit him to tweak the vent, and see a new pulmo for a second opinion, things have changed!
I talked to my pulmo over the phone and told her the plan. She said she was fine with me seeking a second opinion, but she thinks admitting him to play with the vent is a really bad idea for him right now. After talking to her for an hour, I remembered why I love that women, and getting a second opinion for pulmo is now off the table for me. She explained what she thinks is wrong with his lungs, and why cardio needs to step in. I'll try to explain it in laymen terms.
The crap in Jax lungs is not atelectisis, its opacities. Which means its not a problem with properly ventilating him. Messing with the vent will do no good. What it means is that he has major back flow from his lungs back into his heart. Its either from an old clot that has clotted off a vein near his heart, or all the veins he's clotted off in his chest. Whatever it is, blood is not flowing like it should, causing fluid to back up in his lungs. No neb, or vest treatment is going to help this. Cardio needs to look at his heart, and his veins, and see if they can find the problem of the narrowing. The only way to do this would be in the cath lab. I don't want to take him to the cath lab here, they've already proven they aren't good at being thorough, and I'm not putting him through it for nothing. I talked to my ped yesterday, after she talked to pulmo, and she wants to think about this for a bit, and talk to a few doctors first. I completely understand. You see, if the problem is what pulmo says it is, its not good news. Everything to fix this problem would be extremely risky. If it can be done at all. We are talking probably having to put him on bypass, to work on opening up his veins. If they rupture a vein, he dies right there on the table! So we'd have to weigh the risk of surgery, over the risk of leaving it. If we leave it and he gets really sick and ends up in the PICU, then we can't fix it, he would be too fragile for surgery, then we are screwed anyway!
This is what I think....everything we have been doing since we found out he clotted all these veins off, has been a band aid on the problem, but not the fix. Traching him, venting him, they are all band aids that fix the problem for a little bit, but then it comes screaming back!
So this mama's not playing games anymore. I'm going straight to the top. I've contacted the top two childrens hospitals. Childrens hospital of Philadelphia, and Boston. We'll let them look at him, and see if they can tell us what the problem really is. CHOP has already contacted me, and a specialist is going to call me in the morning to discuss his case! We'll go wherever we have to go. Even if we have to eat Ramen every day to pay for it!

First princess photoshoot

We did our first photo shoot with the princess today. Let me just say I can't wait until summer when we can go outside and shoot!!
We could never get the lighting quite right. I think daddy's asking for professional lighting for his birthday!
So its not the best shoot, but we still got some cute pics, and some pics that had really crazy lighting that actually turned out kind of cool!
None of these have been photo-shopped yet. Mostly because my photo-shop is acting up. Grrrr!!

Look how cool these turned out with too much light!






And of course these still have the wet spot on the sheet where the princess thought she would try to eat the sheet!