Wednesday, August 31, 2011

Is this what you want?

Is this what you want??

"funny how you conveniently didn't approve my comment about my disgust for your commentary about "free" healthcare.

How biased of you. You've lost a reader and honestly, with your attitude, I will watch as karma handles you and your family.

perhaps when you LOSE your healthcare, you will be scrambling to find ways to qualify for the free healthcare that some of our special needs children need and deserve! They didn't ask to be born."

First let me say this. The reason I didn't post the first comment, because it wasn't as nasty as this one, is because I don't post anonymous comments that are nasty. That is why I now moderate my comments. I have an email at the top of my blog. If you disagree with something I said, or as in this case, take it the wrong way, you can email me in private and we can chat.

Because you didn't post your name, I don't know what your situation is, but it is obvious that you have a special needs child and that you've been through hardships, as most of us have. I felt sorry for you in the first comment, but quite honestly, this last comment is quite creepy! Because I didn't post your anonymous comment me and my family are going to have this horrible karma? And it really bugs me that you say your child didn't ask to be born. I'm not super religious, but that tells me you think your child was forced to this life, and that they wouldn't choose their special need. It kind of sounds like you are quite cold as well.

You said in the first comment that I was cold. But if you re-read the post, I say that right there! I'm freely admitting that sometimes I am bitchy. But you are also missing the point of the post. Which is sometimes I need a slap in the face to remind me how lucky I am, and that people have it much worse.
But just so you know, I don't stay at home because my hubby makes great money and I don't have to work. I was forced to quite my job to stay home with my medically fragile child. And my hubby's job in Cali, is not this great new job in a new state. Its a mediocre job, with horrible pay. Now again, I'm grateful that he has a job, because so many do not, including a good friend with a sick child. And I thank God every day for my insurance. Trust me, I don't take that for granted!
Again, since I don't know you, I don't know your childs needs. But quite honestly, most special needs do not understand where I'm coming from. If I just had Arina, she would be a little more expensive, and it would be hard to get insurance for her simply because of her diagnosis of Down syndrome. But Jaxson costs millions of dollars every year. Much more than insurance pays for. And because I have insurance and not medicaid, doesn't mean I don't worry about things being covered. Life saving things!
And I don't think that people on medicaid are abusing the system. You don't think I have friends on medicaid? Jax will get medicaid when we move. My gorgeous nieces are on medicaid, and not because they are special needs, but because they have no other insurance right now. I have friends that had to quit their jobs so their child would qualify for medicaid.
There are things that I didn't put in this post because I knew they would cause a huge debate. And there are more personal things that I'm also not putting on here, but may talk to you about if you'd like.
But again, you would have to email me privately, we could talk, and you wouldn't have to hide behind anonymous! And I wouldn't have to use blog space to talk to one person!

Tuesday, August 30, 2011

No soliciting!

In the three years we've been in this house, I never put up my no soliciting sign. I really need this sign, because I'm a wuss and can't say no.

This afternoon I got a knock at the front door. I peeked out the window and could see the feet of a child. I assumed it was one of the boys friends, so I opened the door. It was a little boy about Carter's age with his dad. He was doing a scout project and collecting donations for the Pennies by the Inch, or our local childrens hospital.
I freeze, I feel cornered. I can't tell this boy the things I tell the lady at Walmart that asks me if I want to donate. Things like, I've paid enough money to this hospital already, or why would I pay for someone to get free health care while I pay until I'm broke because I have insurance?
Again I'm reminded at how having a medically fragile child can make your heart cold. When all you do is fight for things for your child, and pay money you don't have day after day, its tiring. When a collections agency calls because your 100 dollar copay from the hospital went unpaid, because you have so many bills to sort through, sometimes one falls through the cracks. You want to scream...what about my son?? Why can't his 100 dollar copay be covered by all your fundraising? Just once??
I took the little boy's envelope into my house and told him I'd be right back. I stood in the kitchen, staring at this envelope. I really don't have any money for this, I have two prescriptions today to pick up for my own son. And I REALLY don't want to contribute. But this little boy was doing something good, and I couldn't let him down. So as hard as it was, I wrote a check for a measly 5 dollars, because that's really all I can contribute right now. I gave the envelope back to the smiling child, and my cold hearts melts!

I just love this pic, even though it has nothing to do with the post!

Monday, August 29, 2011

Late night update

I'm trying this new application to post from my phone.
I'm exhausted and heading to bed. Arina has been fever free, just a yucky booger nose! She seems to do so great with illness. She must have one mighty immune system!
The bad news, Jax has been super junky today. I wouldnt say that he's sick yet, but thats the direction he's headed.
Still haven't heard about the inspection on the house, but an appraiser called wanting to come tomorrow so the inspection must have gone ok. I can't believe in about 3 weeks we'll be moving! Still a little freaked because we may end up moving without a set place to go! Homeless, yikes!
Tomorrow I start school with the boys. I still havent found much for Mondo. Its extremely frustrating, and making me wonder if I can really do this. Finding material for the little ones is easy, 8th grade is proving to be much more taxing!
Night all!

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Sunday, August 28, 2011

Tornado princess

Our princess is not climbing into drawers today.
She woke up with a fever this morning. Her eyes are looking more sick, and she's barely keeping enough fluid down to stay hydrated.
Looks like we'll be taking a trip to the ped tomorrow, working around Jax pulmo appointment.
Two things we hope its not.
1. Another pneumonia that will make them question whether she should be drinking by mouth.
2. Something contagious that she can give to her brother that doesn't handle virus's well!
We definitely don't need Jax sick right now!

Friday, August 26, 2011

A bit of reminiscing!

I am finding that having a fragile child has made me a bit bi polar. Sometimes I want to be supportive of other people, and I understand that different people have different stress thresholds. And some days, nobody's child has the problems that Jax has, and I find myself wanting to tell them to stop whining!

Because I worked in the very hospital Jax spent so much time, I know more about what is going on, and I have never panicked when things get scary with Jax. My first month working, one of my heart kid's passed away on our floor. She didn't even make it to the PICU after she coded. It was horrible, and I really struggled with that for a long time. But when people are asking me how I'm so calm, that's a big reason why. Some days I miss my job so much, and other days just the thought of going to work makes me want to climb in bed for a month!
I worked during Jax 117 day hospital stay. There were times they called me on my pod to tell me they had to reintubate Jax, and I would just walk downstairs to my baby's bedside. In a way it was nice to still be able to bring in some money, and stay close to my critically ill baby. But then there were days when the bi polar feeling hit, and when a mom complains about having to stay a few extra days in the hospital, for a total of 10 days, I have to walk away to keep from screaming.."10 days! Try 3 months lady, and we aren't headed home anytime soon!"

But when it comes down to it, the last 6 years has made me wiser, and made me a much better person, minus those crazy, whiny days!
I was cleaning out Jax closet yesterday, to pack up what I could, and I came across stuff that really hit me.
I found stuff that I brought home from the NICU. Blood pressure cuffs that won't even fit around my wrist! his first pulse oximeter probe, and his little white hat. The hat he wore for a total of 5 minutes when I first held him, then got tossed to the side as he went to the NICU.

Then I pulled out some of those pink buckets they give you in the hospital. I had brought stuff home from Jax 4 month hospital stay in those, because he had so much crap! Tons of soap, tape, and that butt cream that they think works so well. (I still prefer good ole desitin.) And a few things that brought back memories. The mask they bagged him with the very first time he went into respiratory failure and had to be intubated. His little blue buddy, we called it, because he loved when the did CPT on those sticky lungs. It would lull him to sleep every time. The baseball that our minor league team gave Jax. There is a picture somewhere of a player standing next to his bed. He is heavily sedated and doesn't have a clue that they guy is even there!

I try to keep just about everything from Jax stays. I like times like this when I can reminisce about what my warrior goes through. I have these name stickers all over his room. They are name tags they put on PICU beds to keep track of which kid they are at when things get crazy. I've kept every single one. The last few I stuck to paper because I realized sticking them on things in his room isn't going to preserve them very well!

Jax PICU posters. This is a fun thing they do for the kids. They get their likes and dislikes and make them a poster. It makes the room a little less scary, and its fun to read each kids poster. Some of his posters were lost when he moved from bedspace to bedspace. Or if he went to the floor when I wasn't there and the nurses threw them away.

So I had to chuckle at myself the other day. After I packed up all this stuff, I was at the hospital for appointments. I overheard a lady tell someone that this was their longest hospital stay at 14 days. The first thing that popped into my overstressed mind was, "seriously! 14 days! Cry me a river!"
So I had to laugh, change my attitude, and remember we are all different people with different problems.
But for my own fun, and because I'm organizing and packing this stuff up, I posted pictures from hospital stays over 14 days. The first 3 are the same 117 day hospital stay. The rest are all separate stays.

But its always funner to post these pictures.

Wednesday, August 24, 2011

Don't think you can make a difference......

If my eight year old can make a difference, so can you.
Today me and my sidekick went to the school to get a couple IEP's, and try and get some help with homeschooling work. We had to stop at Carter's old kindergarten teacher (Mrs. Nelson) and say hi. This women absolutely adores Carter, and love's to see Arina. She squealed when she saw him, because she thought we'd already moved. She said she was just thinking about us today.
This morning they had a faculty meeting. In the meeting they were talking to the teachers about how to deal with racism, etc. I guess last year they had a real problem with sixth graders calling each other "faggots". Carter's teacher from last year spoke up and said that they also needed to watch the use of the word "retard". She went on to explain that last year she had a boy in her class that was offended by the use of that word, so they had a class discussion about what it meant. She really felt like this issue needed to be addressed as well. Mrs. Nelson said she just knew it was her little Carter that was that boy. Indeed it was!!

If my 23 month old baby can make a difference, so can you.
Tonight we went to dinner. Arina had all the people sitting around us in stitches. She would make a silly face, and then laugh hysterically! I'm not even kidding that people at 4 different tables were waving and laughing at the princess. Every time they would walk by she would charm them with her grin, and they had to pause and talk to her. One lady in particular was getting a lot of waves and grins.
Now lets say in a few weeks or months, a friend or relative comes to her crying. Her unborn baby was just diagnosed with Down syndrome. She is terrified. This lady is going to tell her about the gorgeous baby girl in the restaurant. She going to tell her how "normal" she is, and how funny she was. She's going to tell her that its going to be ok, and she'll love this baby the same as all her other children! And this baby is going to do everything that her other kids did.

What can you do to make a difference??

Tuesday, August 23, 2011


Sometimes I wonder if talking about everything that is going on with Jaxson just comes out to most people as mumbo jumbo. But for those who care, or understand, and for me, here it goes!

We have a whirlwind of appointments this week and next. They all will be last appointments before changing to our Cali doctors. (To which I still don't have a ped, by the way!)
Yesterday Jax had an allergy appointment. I almost canceled it, because he can't do the breathing test the boys do. And he can't really lay on his stomach and get the allergy tests on his back. But I'm glad I didn't cancel, because my ped really wanted it, and it turned out to be really useful info. My ped wanted him checked for allergies to see if that is contributing to his angry, red airway. They condensed the tests down from 43 to 20, and did it on his thighs so he could stay in his stroller. They did all outdoor allergies, dogs, cats, and some foods that could be in his formula. He tested negative for every. single. one! It is so funny because my two boys that look like me don't have asthma or allergies. My two blondies like daddy also inherited his horrible asthma and are allergic to everything outside!
But now that we know allergies aren't an issue, she wants his nissen checked to see if its intact. Her other opinion was he is refluxing into his airway. I told her that in the last week, he's thrown up, and I've found formula in his throat when he gags. So she ordered me to switch to J feeds until we have the upper GI on Thursday. The scary thing is, even if his nissen is not intact, I'm not sure that his surgeon will fix it a third time. It would definitely have to be open, not laproscopic, so they can try to keep it from slipping again. And last time he had it done, they couldn't get a line so they ended up doing a cutdown femoral. It was horribly messy and bled like crazy! He is just running out of all access! I don't want to do J feeds forever. It makes the stomach shrink, and trying to get him to tolerate belly feeds again after long J feeds can be quite the process!
Thursday is also our last neuro before moving. They will turn up his VNS again, and we'll talk about how its working. I'm starting to think it, like everything else, is not working. I'm still seeing the same amount of seizures. And most of the time I swipe the magnet, it does nothing. I'm feeling a little defeated in the seizure area, we've tried everything there is to try, and I think we may just plain be out of options.

Next Monday in pulmo, I don't think we'll make any changes there. So far after upping his PEEP, his lungs are stable. Thats always nice to say.

The buyers do an inspection on our house Thursday. My agent told me it was today, and I got all the kids out by 8:30, then he said, whoops, its Thursday!
Needless to say he had one angry customer!
But in between a lot of appointments and therapies, we'll be packing. Never a dull moment around here!

Monday, August 22, 2011

Urgent good thoughts needed!

Sorry if the title scared you. Jax is fine, and everyone else is fine.

We went under contract with our house last Friday. They accepted our counter offer, and we sold for only 5,000 under asking price, exactly a week after listing it.
Tomorrow morning they are coming to do the inspection.
I'm so nervous I could throw up! I don't know why I'm so nervous, our house is very new, and that I know of, nothing is wrong.
Its just that this whole house selling thing has gone way to perfect, and way to fast, so I'm waiting for that ball to drop! For that one thing that is going to go wrong. Because that is the way it always goes, and I'm just plain tired of living away from my hubby!
You know the saying, if it seems to good to be true, it probably is!

I don't care if there are small things that they want to deduct out of the price, but pray that there is nothing big that makes the buyer not want our home.
If I had it my way, I'd move my whole house to Cali with me, I love it!!

Videos of a princess

This girl is such a crack up!
This first video is her walking with a laundry basket. Hey, whatever helps her walk! Oh and she does have a levi skirt on, its just riding up a bit, or should I say a lot!

The other day I was eating chocolate, and of course she was right there begging for some. I said Mmmmm, and she copied me! It was so cute, she scrunches up her little face. So I tried to capture it on video. She didn't do it as well as normal, she never performs for the camera! But its so stinking cute!

Saturday, August 20, 2011

Happy Birthday Tanner

Happy Happy 10th birthday to my beautiful Tanner!
After being diagnosed with autism at 2 years old, we didn't know how much you'd ever do. After years of no talking, now we can't get you to be quiet!
Socially your doing great, and its obvious that you are really quite brilliant in that little brain of yours! We are working on the anxiety with a new med, and your doing so great. I know that the sky is the limit, and your going to do great things!
Love you so much T-bone!

Thursday, August 18, 2011


A week to the day we put our house on the market, we have an offer! And its not a bad offer either. It seems nowdays with the markets so bad, offers are super low, because people need to sell. This was only 10,000 below asking price. Today we are countering right in the middle, and hopefully thats it. Our house will be sold! I'm trying not to get too excited. They could still back out, or not accept our counter, who knows. But I had showings every single day since putting it on the market, and that was killing me! My headaches and heart palpitations are back with a vengeance. Hopefully they will go away after we are moved and settled!
I signed the boys up for home school until we are settled in Cali. It seemed dumb to start them here for a week or two, especially since we will be going to Cali to look at houses. But so they don't get behind, and I don't get arrested for my kids not being in school, I signed them up.

My sister and nieces from Oklahoma are still here. I think my mom is purposefully not buying their airfare back, because she doesn't want to let go of them! I don't blame her one bit, and this is a big worry for me when we move. You see, I have two brothers and two sisters. Neither brother is married, just the girls. And when we move, all the girls will be out of state, which means all the grandkids are out of state. My sister in Oklahoma, and me and my other sister in California. That is going to be really hard on my mom. And although we will be back often to visit, it still makes me feel bad. But we need this move more than ever right now. For Jax, and for his health.
With all the grandkids here, we tried to get a new picture for my mom. But with two babies, and two toddlers, it wasn't easy!
This is the best one out of about 50 taken!

Other random pictures from that day.

Wednesday, August 17, 2011

A slumber party

How could I possible say no?

The boys insist on having a slumber party with Jax. I say ok, but it has to take place in his bedroom.

So after maneuvering some tubes and cords under blankets, moving his feeding pump to the ground, we had ourselves a slumber party
Funny thing is, I didn't hear a single alarm all night. Coincidence? Maybe.

I think Jax had a great time. My only regret... I didn't have my big camera to capture the moment. Only my little, blury, red eyed piece of crap!
Oh well!

Monday, August 15, 2011

Jaxsons new world!

If your in the online special needs community you've probably heard about the Ipad scam.
A few months ago, just as Jax therapists were talking about him communicating with some kind of device, I heard about an Ipad giveaway. I was super excited when we were told that he was one of the winners. After a lot of excuses on why the Ipads hadn't been shipped, a little digging from people discovered some pretty disturbing stuff. The whole thing was a fraud! The special needs world was rocked by one, evil person. Trust was lost, people went into hiding, and a whole bunch of families that were promised Ipads were left with nothing.
Thats when a couple of SN parents, along with some good Samaritans, decided to try and make this right. Mission Ipossible was born.

Grab this Button!
They are determined to get all these kids their Ipads. The kids were put in random order, Jax was number 7, and he just got his Ipad! Please go to the website and consider a donation of any size. They have partnered with the Gwendolyn Strong Foundation, so when you donate, you know its secure and where its going. They are almost halfway there, and that is so amazing!

Jaxson's Ipad arrived Saturday

Wrapped and ready.

With Jaxson, the Ipad is a whole new world. We are starting with the most basic of things. His vision and hearing are poor, so we just want big, bright things that all he has to do is touch to get a reaction.

Its going to take some tweaking, as it can be difficult to sit him upright, hold the Ipad, and hold his hand to touch the Ipad. Indoors its hard, because he arches and tries to look up at the light. Hopfully soon he will reach for it himself. But he is definitely looking at the Ipad, so the bright is working!

How amazing would it be if someday Jax could touch words on the Ipad to tell us his wants and needs? A world we never thought possible, but it may just be!