Sunday, December 27, 2009

A long overdue update

So I've neglected updating on my little rock stars lately... And I have time for a quick post tonight so I'll take the time to brag a little!

I'll start with Ty-Ty... Who is now almost 5 months, and almost 18lbs. (Daxton was just over that at a year if I remember correctly. It's so completely different raising a puny baby and a chubbo-tubbo... ) Ty is able to sit up for a while now when you plop him down, and he loves standing in the exer-saucer and smacking the toys. He enjoys sitting in the Bumbo chair, but his butt has gotten so fat he almost doesn't fit in it anymore :) We're working on adding in different fruits and veggies to his diet, and thus far he really, really likes fruits, carrots, and sweet potatoes, and dislikes sweet peas with an intense passion rivaled only by his hatred of poopy diapers and the subsequent changing of them. He's babbling and squealing and smiling... And crying and screaming and tantrumming. He's loud and precious and precocious and completely on target with everything he's doing. He's routinely referred to by my pediatrician as "boring."

Boring is good :)

Oh, except that on Christmas Eve another weird blood thing happened. His face and neck broke out in what is called a petechial hemorrhage, which is basically a bunch of tiny bunch of broken capillaries right under the skin. It's probably nothing, and he didn't have any other symptoms of anything major. It can be caused by a number of things, but is something we need to keep an eye on with the previous weird blood things Ty has shown.

So he's now being described by the pediatrician's office as boring, with just a hint of weird.

But that's how most people describe our family anyway. At least we know he's ours :)

On to The Dax-Man... He's made so many gains lately! He went from having one word ("cookie") to lots of words, although "Da-Da" is his favorite. We've also heard "Mama," "up-up," "down-down," "Ty-Ty," "Papa," and "Nana." He's now clapping his hands, and doing it well :) I was worried when we finally got him to clap his own hands (he's been clapping ours for months) because he could never really line his hands up correctly, but now he's doing much better with it... And he loves, loves, loves to do it! He's also waving bye-bye all the time....

He's making some progress with eating... He is willing to try ANYTHING now, even if he can't keep it down or if he gags on it. He still loses about half of the food that he puts in his mouth if it has chunks, but he tries... He's actually teaching himself to eat with his mouth closed so the food doesn't fall out. How many of you with older kids can brag that they chew with their mouths closed? :)

Physically, he's getting braver with taking steps but we only get 1-2 steps at a time and then he carpet-dives. He's been able to stand up in the middle of a room for a couple of months, and he's standing up further and further away from items and then trying to step to it, which means lots of scrapes and bruises from falling into or onto what he's trying to get to. He has a riding toy he can climb onto and off of, and he's figured out that pulling all the way up and standing on the seat like a stunt rider is super-fun. And he's not even two yet. His teenage years will be the death of me...

And he suddenly has a mouth full of teeth, molars and all. Not sure if I'll recognize him if he doesn't have a mouth full of drool!

The boys had a great Christmas, and much to our surprise they were actually good enough for Santa to come. Our living room, which was previously described as "Six-Flags Over the Living Room," now looks more like a "Six-Flags Over the Living Room after a tornado went through." Oh well, they're only young once.

And that's it in a nutshell.

As for the insurance drama, we're still trying to raise awareness and have a meeting scheduled tomorrow night (that would be Monday, December 28th) at 6:30 at 801 East Old Hickory Blvd in Madison, TN. The meeting is to help parents fill out their peach pages and answer specific, individualized questions about what options our disabled children qualify for. Any and all are welcome to attend, and you can bring your children if you're unable to find a sitter.

And I had a nice, long conversation with Rep. Maggart before Christmas. She's on the Tenncare committee and is supposed to be looking into some things for us this week. We'll see what happens. It was just nice to have some acknowledgement from an official that this is a problem and our children are falling through the cracks. At least that's something.

Oh, and we made the paper again today: Here's the link to the story. It highlights Daxton's issues more so than the global issue, but it's getting the story out there. Maybe it will fall on the right ears and/or eyes.

And now I must go hook up a handsome young devil to his machinery and prepare for the Monday following a holiday (which is never, ever fun.)

Hope you all had a wonderful, safe Christmas!

Sunday, December 20, 2009

An Open Letter to the State of Tennessee

Hello friends and fellow taxpayers. While most of you are out battling the crowds and the typical hustle and bustle of the holiday season, there are some of us fighting a different kind of battle. This holiday season there are many of us among you who are struggling to ensure our medically-fragile children can continue to get the medicines, equipment, and help they need. Due to a recent federal court ruling, TennCare is kicking out thousands of medically-fragile and disabled children across the state simply because their parents are middle class, regardless of the child’s level of need. What does this mean? This means there will soon be hundreds of hard-working, good people who will lose everything in order to keep their children healthy.

Why should this matter to you? It could be you. None of us planned on having sick children. We had plans of our children being doctors and football stars just like you. We love our children no matter what, though, and will do whatever we have to in order to give them the best outcomes they can possibly have. We will lose our homes; we will file medical bankruptcy. Our children may not be perfect by society’s standards, but they are worth loving, and they are worth saving.

I think what bothers me the most about this whole situation is the complete disregard shown to us as middle class families, and to our disabled children. I have written emails to Diane Black, Debra Maggart, Michael McDonald, and Bart Gordon, and have spoken to someone in each of their offices either via phone or in person. Bart Gordon did have his liaison from TennCare contact us to go over options; however, I have not received any reply or acknowledgement from any other office. I have also contacted Governor Bredeson’s office and have received no reply from him, either.

Really? Are our children that unimportant? Are sick children’s medical needs so far down the list they don’t even warrant a response?

We’re not looking for handouts, nor are we looking for sympathy. We’re looking for equality. With the new TennCare rules, children of lower-income families or of non-legal residents will continue to qualify for the care that our children will be losing. The reasoning must be that if we have enough money to support TennCare and pay our taxes, then our children must not be that sick.

So, as our children fight to live and to thrive, we will fight to ensure they can continue to do so. Our children have not made it this far for us to give up on them now.

And we will not give up.

Our disabled children have taught us what is important in life, and they have taught us what is worth fighting for. Unfortunately, we are also being taught how broken our system is, and how apathetic our government officials can be to the plights of the working families who elect them.

So we are asking for you, as our friends and neighbors, to help. Please help us spread the word to our officials that our children matter, and that middle class families matter. Please help us prevent our children from falling through the cracks. You can help us make a difference, and you can literally help save a life. Our children are worth it!

Sincerely,

Mollie Sheppard

Friday, December 18, 2009

Meeting scheduled to help with peach pages

Hi all,

I've gotten a meeting organized with the TennCare expert from the Tennessee Campaign for Health Care Justice. He's going to be available to talk with any/all parents or advocates who have questions about TennCare, the peach pages, or disability options.

Everyone interested, please keep your schedule open on Monday, December 28th. The meeting is scheduled for 6:30, and we'll figure out where once we know how many people will be attending. If you haven't done so already, DO NOT send in your peach sheets until after you talk to this guy. He may have valuable information to help keep your child covered! This guy really knows his stuff!

Please let me know if you can make it, or if you are interested in more information!

Monday, December 14, 2009

Dax had his EEG on Friday... He was such a trooper! Thinking we may go as a mummy next Halloween... He really knows how to rock the gauze :)

Tuesday, December 8, 2009

What a (not) fun day

So I got on the phone at 7:30 this morning and just started calling. Each person I talked to gave me more numbers and I called some more. I called the same numbers twice to talk to different people, hoping for a different result. I stopped making phone calls at 6 when no one would answer.

And what have I found out? A whole lot of not so great news.

I've found out it doesn't matter how sick Daxton is. He's disabled; there's no denying that... And they feel terrible about it. Poor kid. But we make too much money. Sucks for him.

Options? There are no good options.

Still freaking out.

So I'm working on an email to my senator and my representative. I'll put a template on here after I send off my initial mails, and if any of you have a second to spare and can copy and paste it and email it on it would be fantastic... We're working on getting our local Fox News interested and hopefully get some more community involvement. It's not just us this is affecting... I've been back and forth with several of my sick-baby-mama-friends today and most of us are at a complete loss... And there are thousands across the state in our same shoes, all because we're the working middle class.

This really stinks.

Freaking out a little... Okay, a lot.

It's 2 AM and I'm sitting here awake. We got a nice little letter in the mail today that is turning our little house upside down, and I'm freaking out.

Yes, I shouldn't worry. Yes, it's in God's hands. Yes, I get all that.

But when your son's quality medical care, equipment, therapies, and medications are all supplied by an insurance you've been promised he'll have until he's 21, and then that company says, "Ha ha just kidding," it freaks you out a little.

And that's what has happened.

When Daxton was born he automatically qualified for SSI and TennCare. We knew the SSI would go away once he was out of the hospital, and that's fine. TennCare, however, has been there all along to pick up whatever our private insurance does not pay for. Come to find out, our private insurance doesn't pay for a lot.

Things TennCare has picked up include home health nursing, medicines such as Synagis which are key in keeping him out of the hospital, speech and swallow therapy and physical therapy, equipment, such as his oxygen and feeding tube supplies, and all of our co-pays along the way. It's helped out tremendously in ways that you can't even put a price tag on... If TennCare had not paid for nursing, Daxton would have gone to daycare. How many times would he have been hospitalized if he had been around other children? How sick would he have gotten?

And the bottom line is, we don't want Daxton to be on the system forever. It's getting him healthy, and getting him caught up now that are important, so that one day he won't need any extra help. And he won't, God help him, if he's able to get the services now that he needs.

But, thanks to a federal court ruling in 2008, all the children who were placed on TennCare due to their diagnosed disability and long-term care in the hospital, but whose parents make too much money and pay too much in taxes and social security to actually receive social security, will be kicked cold-turkey out of the Tenncare system. And apparently very soon.

What does this mean for us? It means come January 4, 2010, my son will no longer be eligible. We will likely lose our nursing care, therapies, and will possibly be paying for all Daxton's equipment out of pocket unless we're able to get our primary insurance to pick up. Meanwhile, a baby down the street may still get all of those things because mom or dad choose not to work. That kid can get WIC, SSI, and TennCare. Mine cannot because we both have college degrees and choose to work and pay our mortgage and our bills.

How's that for a broken system?

So, needless to say, I'm taking the day off work tomorrow, err, today, and I plan on burning up every phone I can find until someone gives me some answers. For now, hopefully now that I've vented I'll be able to get a little sleep and be rested for the attack. In the meantime, please pray for us, and for the thousands of families just like us, who are going to be fighting this battle to keep our children healthy and taken care of... Because in the end, it's not about the mom or the dad, it's about the kids and their futures, and EVERY CHILD deserves the chance to thrive.

Thursday, December 3, 2009

One year ago...

One year ago today we brought Daxton home after 232 long, long days in the NICU.

One year ago today, we left behind our safety net of nurses, doctors, and respiratory therapists along with the rest of our NICU family, and drove our baby to his little green nursery with monkey murals and a staff of only two, not including the nurse we wouldn't meet until the next day.

One year ago today, our precious little 11-12lb little boy (depending on how much fluid he was retaining at the time) spent his first night in his crib, with Shep and I camped out on the floor on air mattresses with no remote possibility of sleep.


One year ago today, Dax's cry was so quiet you could barely hear it, so we responded to alarms, and instead of late-night feeds we had late-night g-tube malfunctions.

One year ago today, Daxton's O2 sats would drop immediately if he was off his oxygen. When he was upset he would stop breathing, sometimes passing out and requiring sternum rubs to wake up and breathe.

One year ago today Daxton still turned blue. Regularly. And with great fervor.

One year ago today Daxton was on Lasix and potassium and Digoxin and Viagra and Pulmicort and iron, not including his PRNs. we had to suction him at least twice a day so he could breathe.

One year ago today we weren't really sure what the next year would bring...

We could have never known it would be the best year of our lives!

Thank you all for the many, many prayers that have been said on Daxton's behalf, and for all the love and support you have surrounded us in. For all these things, and a thousand other things, we will be forever grateful!


And now is a great time for some photos...

Before we could leave he had to have his hearing test. He failed. Such an underachiever!

We couldn't find scissors, so Mommy bit off my hospital band :) She was ready to go!


I was so excited to go home! Can't you tell by the look of pure joy and anticipation?


I had more luggage than Mariah Carey, and about as big of an entourage!



Lola gave me lots of kisses when I got home! Either she really liked me or I still had peaches on my cheeks :)
After a long day I napped in Daddy's recliner. It was good to be home!


And as the grand finale, here's a video from today... Our little boy is growing up!

(And, yes, that's what my living room floor normally looks like. And, yes, that basketball goal/baby cereal can I have duct-taped to the wall is a little ghetto, but it works better than any kids' basketball goal I've found at the store. And yes, Daxton broke our blinds and we will not be replacing them until the kids are in college. And no, I wouldn't change a thing. Not one bit!)

video