SCATTERED

Why their wives will be potty training them

2012-01-28T12:32:00.002-06:00

I am a patient person. I am consistent and reliable and patient and I love my children dearly. In my work life I've helped dozens of adults and children learn to use the bathroom independently, whether for the first time or re-learning following a car accident or stroke, etc... I know what to do and how to do it and I am excellent at teaching my children new skills.

But I quit. These boys will never be potty trained.

Tyler is almost ready. I know he's at that place that if he just paid attention one time he'd get it. Just once. One day hopefully it will just click for him on its own, preferably before college. Fingers crossed. He's just much more excited be to be able to stick his hand freely down the front of his shorts and check out the neighborhood. I guess it's the little things in life ;)

Dax, on the other hand, is not ready. Not even close. He's so stinking smart, though, and I know with him things will just click, too, one day, and it will all make sense. He just seems so desensitized to discomfort and doesn't know that wet or dirty is bad when it comes to pee or poop. Doesn't bother him at all. Couple that will a g-tube liquid schedule which causes him to pee a lot in the morning and overnights but not so much in the afternoons, as well as a poop schedule that, Miralax or apple sauce or prune juice be damned, leaves him pooping a small country every three days whether we want him to or not, and, poof, you have a recipe for difficult toilet training.

Of course, I blame the mother. I haven't spent nearly enough time working on it, and my work schedule sucks, therefore we're left with endeavors into potty training that are fit into when it is convenient for me. That doesn't work in the potty world, and I know better, but you work with what you got.

Fast forward to today. I'm refreshed from a recent vacation, as caught up as I ever get, and I thought, "Today I will get the boys potty trained."

Our early interventionist told me earlier this week that she knew of someone who'd ditched undies and just used pants because there was more of a sensation of pee running down the legs, so I break out the shorts and pants. I strip down the boys and start pumping Dax with fluids via tube and tossing Ty a sippy cup any time he looks my way. We get on the big potty and play. I put a potty chair in the living room and have them sit and play. I put in Elmo's Potty Time video and we sing and sit on the potty and we dance and sing and play.

Meanwhile, both boys wet their pants. No biggie. We're just getting started. They'll get this today!!!

Dax comes over and he sits on the little potty, and it was then that I noticed a smell and saw a little poop smear on the seat. Holy crap on a cracker, I've actually just caught him right before a third-day poop!

I grab him up and we ruuuuuuun to the big potty and I sit him there and he starts immediately trying to get down. He cries, and he fights, and he screams, and he cries, and he flails, and he cries...

(I should add here that, historically, Dax has always had to squat to poop. You can sometimes tell it's about to go down (pun intended) by watching him bounce up and down into the squatting position for a bit, or if he comes and gives you a big bouncing lap dance.)

I know potty training time should be fun, but I also know that, for Dax to be successful with this particular poop, he's got to stay on the potty until he's finished. So, I hugged him and kissed him and I sang to him and we made poopy faces and I taught him to put his feet up on the toilet seat and hold on to the kiddy handles and push and we yelled "Out, poop, OUT!" and we yelled "Poop KING!" and we yelled "Get OUT of my belly!" and I gave him tummy massages and squeezed his stomach and after over 20 minutes of almost continuous crying on his part, and me agreeing it was time to fail so he wasn't scarred by the potty for life, I picked him up and carried him over to the diaper basket so he could exorcise the demons.

And that's when the shit hit the fan.

Not literally, but close.

Dax's feet had not even hit the floor yet when he pushed himself into a squatting position and shot poop across the carpet and onto the couch.

It. Just. Kept. Coming.

Tyler, of course, immediately steps in it.

I picked Dax back up and ran back into the bathroom, putting him back onto the potty, ripping off his poop-covered socks. I clean Ty's feet, get him out of the living room, and lock the gate, letting him run his newly naked hiney around the kitchen while I tend to poopapalooza. I got Dax's butt cleaned up, get him down, and then let him run around the kitchen while I venture into the living room to assess the damage. One plastic bag and 20 wipes later I was almost ready to get the carpet cleaner out and life would be good again.

But wait.

When I walk back out into the kitchen, I find Lola the bulldog licking the floor and Dax's leg. He has pooped again, and peed this time, and she is cleaning it up for me. Dax slips down in the pee/poop/dog slobber puddle. I pick him up and clean him up once more.

As I went to get a diaper to put on him, he pulled out his g-tube. All the fluids I had been forcing into his tummy? Squirting out onto the floor with that lovely stomach acid smell we all know too well.

Lola came over to help clean that up, too.

I diapered up the boys, I got his g-tube put back in, I wiped off any of the various residues, I cloroxed the floor, and I scrubbed the living room floor and couch. I got the poop off my phone, off the counter top, off the little potty chair, off the baby gate, off the wall, and any other place with evidence.

Then I had a pity party and showered.

And now I'm eating the M&Ms that were purchased for their potty training successes.

My treat for a dismal potty training failure.

The spring. Maybe I'll be brave enough again in the spring.

Special needs parenting... Said better than I ever could

2012-01-14T21:10:00.001-06:00

I saw this on another blog and... Wow.

So perfectly written by Candace Barnes - A Cerebral Palsy Mom

Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next. We become educated in the legal, medical, and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it, eat it, sleep it, we also dream it. Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled, humiliated, felt guilty, made ashamed, brought to the point of begging at times, made angry, made determined, driven to the point of desperation, all for the sake of our children. We have sat in hospitals for days, weeks, months praying that our child makes it one more day, praying that our child lives long enough to know how much we love them, stood the onslaught of surgeries that could be life threatening, procedures that could make the situation worse, been through treatments that would make a grown man cringe, all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things. We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made, every piece of equipment, every new medication, every strange idea on the hope that it might work. We have dealt with quacks, conmen, inexperienced people, uncaring individuals, rudeness, and cruelty toward our children. We have lost everything, sold everything, traded everything in the pursuit of help for our children. We have given up friendships, family, relationships, and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed. We have learned to be realistic people. We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts, angst, miseries, hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors, more surgeries, more treatments and procedures with a smile on their face. We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have, we see their abilities as well as their limitations when they go through the procedures, treatments, surgeries, and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage, determination and – most of – the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives. So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies, more complicated messes, and deal with more situations than you can imagine. We have been bent, sometimes broken, medicated, treated, depressed, angry, sad, and most of all a little fearful of the future. We have slayed more dragons, conquered more worlds, invented more items, discovered more truths, and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors, therapists, surgeons, nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses, other children, housework, jobs, friends, family, society, and our own health because we have been busy in the pursuit of a better life for our children. So do not think that we are incompetent – instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves. So listen to us when we speak because we know what we are talking about. Don’t talk down to us, respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive, we earned it the hardest way possible, and we carry that badge of honor with us in every single thing we do, every word we speak, and every action we take.

What Aubrie's Angels has given me

2011-12-26T16:57:00.002-06:00

So, in my blogging hiatus we have completed anothersuccessful year of our Aubrie’s Angels toy drive. What a blast! Our churchpicked up the cause locally this year, as did the church I grew up with in Mississippi. BeforeChristmas, 23 total families were chosen as recipients this year, as well asthree separate classrooms. Then after Christmas the blessings just kept rollingin, and we’ve had even more toys purchased and more donations made to give tospecial needs families who need a little help this year… A donation was evenmade to an early intervention preschool in North Pole, Alaska, which is so fun and exciting to me!

I get a lot of back-pats and kudos for what we’ve started,and there’s something I want to say. I am ridiculously proud of what we’redoing. Ridiculously. Wow, we’ve been more successful in what we’re doing than Ieven expected. I always knew this project would mean a lot to me, but I neverexpected it to mean so much to everyone else. When we came up with the ideabehind Aubrie’s Angels, it was simply meant to give back in a way that wouldmake me feel that Aubrie mattered in the world, that her life had significanceto someone other than us. It was actually a selfish motive, I suppose, but thatwas my intent. I am grateful for helping others, but the greatest source of myjoy comes from knowing that my daughter’s life will make the world a betterplace, hopefully for many, many years to come.

As a special needs parent myself, I understand how boggeddown one can get. I understand not being able to afford every little thing thatmight help. I understand the unbridled happiness a parent experiences when achild who has difficulty interacting with his environment is given a toy thatchanges his life. I understand the hope, and I understand the sadness. I am soincredibly thankful that we have been able to support families that walk inthese same worn-out shoes. It’s been such a blessing for me to be able to help,and helping these families have joy each December has become what Christmas isabout for me.

But here’s what you don’t know. Here’s what Aubrie’s Angelshas given me…

I’m not sad anymore.

I’ve often looked back with regret at our pregnancy fouryears ago… Should I have pushed harder for the doctor to pay attention? Wasthere something I should have seen or noticed? Would I have been able to changethe future if I had just spoken up a little louder, or pushed for one moreextra doctor’s visit?

It hit me when Tyler wasabout eight months old when we were grieving what would have been Aubrie’ssecond birthday, that, had she lived, there would be no Tyler. We wanted two children, not three, andwe had planned to be done after the twins were born. Following that line ofthought, to wish Aubrie alive would be to wish Tyler away, and I just couldn’t wish that mybaby had never existed. On that day I accepted the past.

But still I felt sadness. My poor baby girl… and all thatshe could have been…

But now, I am not sad anymore.

Aubrie has become a household name locally. She is no longera forgotten child that no one thinks about, or even knows about. She is aperson who existed, and she is making a difference in the world. Just recentlya stranger approached me and said, “Oh, are you Aubrie’s mom?” Why, yes. Yes Iam. And I am very proud of what she’s set into motion.

Because, you know what? If she’d never existed, there wouldbe no Aubrie’s Angels. I would be perfectly content each Christmas and I wouldnot know that life could be any sweeter. Thank God for her and her perfectlittle life and for the beautiful changes brought about by the flutter of herbutterfly wings…

Because of her I feel no sadness, only joy.

I am not sad anymore.

And that, my friends, is what Aubrie’s Angels has given me, and that is the greatest gift of all.

For Prematurity Awareness Day

2011-11-16T21:10:00.001-06:00

For All Our Babies

For all the babies who couldn’t breathe

For all the babies who couldn’t eat

For all the babies who couldn’t leave the hospital whentheir mothers did

For all the babies who fought for every milestone

For all the babies swaddled in blankets and wires and tubesand leads and probes

For all the babies who were never held

For all the babies who will only know a hospital home

For all the babies who will be forgotten, or never known, byothers

For all the babies who were born so tiny

For all the babies who were born so early

For all the babies who have overcome

For all the babies who haven’t

You’re our heroes, and our peace, and our hearts.

And you’re perfect.

Sweet Justice for a Sweet Baby :)

2011-11-03T15:57:00.000-05:00

Sometimes there are terrible stories with terrible endings.

But, sometimes, just sometimes, terrible stories have a happy, happy ending.

Remember Sweet Baby?

Well, yesterday, his terrible beginning was left behind, and his new, much better beginning offically started. Sweet Baby was finally adopted.

Congratulations to Team Baby. All the sleepless nights, the hospital stays, the tears, and the worrying have led you to this day.

And now, it is my sincere pleasure to bring you Mr. Chase, official son of Josh and Tonya, and brother to Landon :)

Because, seriously, who doesn't love a happy ending?

A toast to beat all toasts

2011-11-02T18:36:00.000-05:00

Yesterday I had the distinct pleasure of grabbing drinks with two people who worked in the NICU during our NICU time, both of whom have my heart for eternity. The conversation drifted to how difficult NICU life can be for mothers, like the times when we're sitting there trying to make conversation while the nipple nazis are massaging our boobs and trying to get the baby to latch. My one friend said, "Oh, it takes a special relationship to be able to do that."

"Um, you've both seen my vagina," I say, as the bartender delivers our drinks.

The conversation then turned to my deliveries, and who was where, when, and why.

"Well then," my friend says. "It's Mollie's vagina that's brought us together. Cheers to Mollie's vagina!"

And we toasted my vagina, and all her contributions to the world.

Maybe I'll add her many accomplishments to my resume.

Why yes I am pretty much the most awesome mother ever. Thanks for noticing.

2011-10-29T18:30:00.001-05:00

(Totally found the idea on Pinterest)

This message has been sent using the picture and Video service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, Quicktime@ 6.5 or higher is required.

I actually posted videos. Please hold your applause until the end!

2011-09-29T13:47:00.000-05:00

Just in case you'd forgotten how cute my kids are, here's a couple of video reminders...

Video numero uno is of Dax showing off just how brilliant he is, even if his grasp on the English language is just a tad bit sloppy. Oh how I love this boy and his squeaky voice.

And for numero dos I present you with my TyTy as he does his morning ritual to make sure his nipples are still attached. **Spoiler alert, they are.

Guess what?!?

2011-09-28T22:32:00.001-05:00

So something very fun and scary is happening. It appears, all of a sudden-like, that I have an agent.

As in a "Oh crap I have to write a book now" agent.

You know, in my free time.

I'm hopefully going to be blogging more frequently over the next bit, and I may ask for some feedback from you all regarding your own experiences and opinions as I get further into my project. I want it to be great, and I'll need your help :)

Now I'm going to take a deep breath and procrastinate.

And the award for best blog follower goes to...

2011-09-13T22:17:00.002-05:00

I have a gazillion things to catch you fine readers up on, but instead I'm just going say that one of my favorite readers called the other day and complained that I don't blog anymore, and then she bought me a cruise ticket. I heart you Lynn, and you win my reader of the year award. I wrote this post just for you! :P

iRoadkill

2011-07-28T17:54:00.000-05:00

I deliberated a long time for what to get Dax for his thirdbirthday. Seriously, the boys already have everything, and the one thing Iwanted to get for Dax was an expensive little computer that he would probablythrow down the stairs and break… But we bit the bullet and got him the iPad 2anyway. Ordered it the first morning it was released.

Best. Purchase. Ever.

Dax and Ty both took to it immediately. Colors, numbers,letters, videos, matching, fine motor, verbalizations, turn-taking, roleplaying…. What an amazing therapy resource in a tiny little package. We put ona screen protector and a protective case, and my friend Karen made an awesomebag for him to carry it in. Other than a scratch here and a scratch there, theiPad has escaped mostly unscathed… Even when thrown down the stairs or over thebaby gate onto the kitchen floor.

Turns out even iPads have limits, though. Like being runover. Who knew.

The iPad was accidentally left on the roof of the car on Tuesday, and when we found it on the highway three hours later it was officially and undeniably dead. There are NO apps for that.

Ouch, my pocketbook.

Took it to The Apple Store today to see what could be done…

And they GAVE us a new one.

As in, here you go, it's free.

Holy crap.

Apparently they have a one-time whoopsy-daisy policyfor replacing iPads that are broken by accidents… Like when they become roadkill.

Thank you, Apple, for the amazing product and the outstanding customer service. You’ve just made me an Apple customer for life.

Big Brother, and Mother, are watching

2011-07-25T19:28:00.001-05:00

I have always been anti-video monitor for my kids. Call mecrazy, but I was afraid if we entered into the world of constant videosurveillance we would never cross back over that line into “normalcy.” I’ve gotfriends with video monitors for their kids and they are constantly checkingtheir (healthy, typical) children and, well, with Dax’s issues I was afraid itwas a line I’d never be able to cross back over.

Sure, now he has a few health issues, but what about nextyear, and when he’s 16. Or married? There is a time to closely monitor, andthere is a time to let go. I have tried to give himself and myself the libertyof letting go by only monitoring auditorily, and not visually, when it’sbedtime. It’s the same reason I don’t keep him on his pulse oximeter unless heis sick, or sleep on the floor in his room (anymore, unless he’s sick.) I wantto smother him under the weight of my continuous protection, but I have to, forhis sake and mine, give him some degree of normalcy.

But Saturday I bought a video monitor. It’s pretty awesome,and I can now stare at him while he’s sleeping and sleep even less than Ialready did because I can so easily look over and check on him… And here’s thestory of why.

Tuesday in PT Dax fell, and he fell hard. My busy, rambunctiousboy was *running* down a hallway *kicking* a ball, when the ball was caughtunder his foot and he went airborne, landing on the back of his head. Wemonitored for any signs of a concussion and he seemed fine. And seriously, thekid falls all the time so it’s not that big of a deal usually.

Wednesday Dax was fine all day. When I was walking with himin to OT that afternoon I noticed he was falling on the ground. A lot. Butthat’s not atypical for him if he’s tired or cranky or just doesn’t want to go totherapy. So no biggie.

When we got upstairs was when he really started to worry me.He was clingy and crying and he just. kept. falling. I went to grab the PT tocome look at him, and we all watched together as he couldn’t walk, couldn’tsit, couldn’t stand.

And I’ll admit, I freaked out a little.

I took him to the ped right away and by the time we got outof the car at the doctor’s office he was FINE. Balance was back and he wasperfectly happy. The ped checked for neurological symptoms again and, again,everything looked fine. She diagnosed a probable inner ear issue that heprobably cleared himself doing Stevie Wonder head which he does all the timeand that is actually the prescribed treatment for removing inner ear specks.

Phew! No biggie.

We go home and complete the bedtime stuff and go to bed,with dreams of sugar plums and therapy schedules dancing in our heads. At midnight Dax woke me upwith his sleepwalking. (Side note, his sleep walking is hilarious. Since hestill sleeps with O2, he’ll walk until the end of his O2 tubing and then standthere and cry. He will occasionally crawl under his bed or get stuck behind hischair, but he never sleepwalks any further than his O2 allows.) I put him backin his bed and took off his O2 in case he got back up because as cute as hisshort sleepwalks are, I always worry that he’ll get the tube wrapped around hisneck somehow and choke… And then I went back to bed. Around 3AM I awoke againto hear him making a strange noise, so I go back to his room expecting it to bea nightmare. He wasn't in his bed. I turned on the TV for more light and foundhim lying face up under his brother’s bed covered in vomit and having aseizure.

And I admit, I freaked out a little.

He was hot, and he has febrile seizures, so I held him andcomforted him and gave him some Motrin and within the hour he was fine, so Isnuggled him in the bed with me so I could keep a close eye on his temperatureand then we went to sleep. His brother had had a bit of a stomach bug withfever earlier in the week, so I had a pretty good idea of why he was ill. My only fear was he had aspirated vomit, and that dread of what couldhave happened if he’d had his head turned two inches to the right and he had drown. But he hadn’t, and he seemed okay, so, again, no biggie (ish.)

I got up and began preparing for the day. He was resting wellwith no temp, so at nine I would give him another dose of Motrin to make surewe stayed on top of the fever before it came back. I heard a strange noise fromthe bed and found him seizing again. This time his temperature was 97.4. Hmmm,that’s new.

I called the ped and she had us go to the ER at thechildren’s hospital to get a CT just to rule out a slow bleed from the fall onTuesday. I was positive we’d be in and out but packed a change of clothes forboth of us just in case of another puking episode. I transported him with noissues and he made eyes with the ER nurses and wooed them with his renditionsof Queen and Elton John, his current favorite musical artists. I repeated thestory of what our week had looked like about 74 times because it’s July andresidents are mostly useless, and when I could tell Dax would be having anotherseizure soon I let them know one was coming in the next little bit. Fiveminutes or so later it did, but this one didn't stop. For over twenty minutesmy baby lie there dusty in coloring, mostly non-responsive, and seizing. Twodoses of Ativan didn’t do a thing, but finally some Keppra got it undercontrol. While he was out they completed a lumbar puncture and the ER attendingtold me the CT results had come back with what appeared to be two new ischemicareas, possibly indicating a stroke.

WTH?!

So we sit and wait with no idea what on earth is going onexcept that my baby isn’t acting like my baby anymore. My friends were amazing;they showed up bearing hospital necessities and distracted us by helping uslaugh at the downright ridiculous things that residents say and do. (A personalfavorite was from an adorable medical student we actually liked. He says, afterobviously not reading the chart, “How was your pregnancy?” to which I replied,“Short,” and we (as in me, Shep, and Nancy, not the cute little student) laughed. I explained he was a 23-week preemie who survived histwin sister who was born at 22 weeks, to which he asked, “Oh, really? How ishis sister doing?” and I answered, “She’s not.” Again we laughed [inappropriatelyI suppose] as his brown face turned slightly purple. Poor guy, but, seriously.) At any rate, he was eventually moved to a room and we waited for answers. Itwas finally determined that enterovirus had shown up in his spinal fluid,indicating viral meningitis. Yay! An enemy with a name, and probably the bestcase scenario for what we were experiencing. An MRI (with NO new ischemicareas, and no other changes from his initial MRI done at 8 months) and a normalEEG later and they were ready to send us home.

Huh?

My baby was lying there mostly nonresponsive, crying when hewas awake, unable to sit up independently, running a temp, and requiringoccasional oxygen support for his frequent desats. Yeah, no. We’re not goinghome until I’m sure he’s not going to get worse before he gets better… To whichthe attending replies, “What, is this not his baseline?” No, this is not hisbaseline. Forget the chart, forget the MRI, remember the person. NO, I repeat,this is nowhere near his baseline. “Oh, well then we’ll keep him to observeovernight and hope for some improvements.” Yes, we will.

3 AM I am awakened by the stirrings of a little boy wholooks at me and actually sees me and smiles with this look of “Oh my goodness,Mama, where have you been?” and he plies me with dozens of kisses. He sees thegreen lights on the bed and yells “GEEN!” and dives to push the buttons. Hewiggles so much his leads keep popping off and he yells “BEEP BEEP BEEP” each timethey do. He sits up, and he smiles, and he sings, and he responds. Oh, thankyou God, my boy is back.

He settles again, and by the time we get up and at ‘em he isable to weight bear for the first time since Thursday, and even startsattempting to walk. He stumbles and falls, but he keeps going just like healways does. The attending from the previous night sticks her head in and Ihope was able to learn a lesson in not pigeon-holing children without firstasking about their typical behavior. And then we went home, just us and ascript for an anti-seizure med (which I argued about with the neuro attendingfor 15 minutes of my life I’ll never get back, but that’s a post for anotherday.)

I got Dax settled, went by to pick up TyTy, and straightawaywent directly to Target and unapologetically bought myself a video monitor.

Hopefully one day I’ll have the courage to give it up.Hopefully one day I’ll be able to sleep soundly all night without worrying thatmy kid will drown in his own vomit, or gag on drainage he just can't clear, or choke on his O2 tubing, or any of the other random assortments ofmedical stunts he tries to pull… But until then… Be aware, little boys… Mama has eyes in the back of her head, and she can see through walls, too.

Sweet Baby's day in court! UPDATE

2011-07-24T20:10:00.001-05:00

Hi friends! I have a blog post a'brewing, but before my life got in the way I wanted to post a special request for prayers and happy thoughts. Remember Sweet Baby?

After much, much ado, the termination of parental rights hearing starts TOMORROW!

What a very big, very important day for a very special, very adorable little boy.

I'll update you all as soon as it's official!

***UPDATE***

It's official!!!!! Sweet Baby is now an orphan :) They still have to wait on any appeals, but the deal's almost done. Team Baby will soon be getting their "Bill of Sale" (channeling Pete's Dragon) that he's all theirs :) The "biohazards" didn't even bother showing up for court. Finally they did something good for that sweet baby boy!

Not a Father's Day post, but Happy Father's Day anyway

2011-06-19T22:37:00.002-05:00

So, a friend called me on Friday trying to gain some insight into what to do to help her nephew and his wife upon hearing they'd just found out their yet-to-be-born baby had passed away. She asked me about Aubrie and cremation and such, and I ended up taking some pictures of Aubrie's urn to send to her.

Aubrie's urn has always been in Dax's room. Knowing they're still "together" gives me peace, and I've always felt that she would want to be with her brother(s), too. (I will interject here that she's on a very, very, very high shelf, as any of you who know the boys and their fascination with throwing things down the stairs would understand. And, as a sister, I know with 100% certainty brothers especially like to throw sisters down stairs!)

At any rate, all that being said, I took her urn outside for pics so the engraving would show up better, and when I brought her back in I put her down in the kitchen. She's always stuck on the shelf in the boys' room, and, as irrational as I know it is, I thought maybe she'd enjoy a little more action... So I talked to her for a minute and I left her in the kitchen.

Fast forward a few hours, and Shep is fixing some food and turns to me with this strange look on his face.

"Umm, why is Aubrie in the kitchen?"

"I got her out for a photo shoot and I thought she might have been bored, so I left her down here so she could have a little more excitement."

"Oh, okay. That makes sense."

And it did.

Right?

Hold on to your breetches, it's an update!

2011-06-05T19:15:00.000-05:00

Hola, remember me? The world’s worst blogger? I’m back, if only for a moment. Time for an update!

The update is… that nothing much has changed. The boys have been healthy for the most part, and they’re both growing well. Dax has just taken off developmentally lately and he’s progressing in every single area I can think of. Expressive language remains his biggest hurdle right now, with him having poor word finding, poor articulation, poor oral motor coordination, poor breath coordination… You name it, it sucks. He still loves signing and he’s really good at recalling signs, but again, finding a word he wants to use spontaneously is hard for him. Receptively he knows so much, and he loves, loves, loves showing off all his knowledge. He’s a sponge and a people pleaser, and that makes therapy and school so completely fun and beneficial for him.

Dax turned three in April, thereby ending our time with early intervention and beginning our time under the school system. The change has been both good and not so good, as the IEP process has left me completely and utterly underwhelmed, but the teacher and speech therapist we see with regularity are both so very good with Dax and are flexible to his needs. As for the IEP part… I won’t go into all the details but he’s already had THREE IEP meetings since his first on March 28, and I plan on another in August or September. Dax will be homebound this year but can hopefully start attending school with his peers in the fall of 2012.

We’re also very excited that a local early interventionist and her husband, a Tae Kwon Do instructor, have teamed up and started a special needs Tae Kwon Do class. Dax has been going each week for about a month and he’s done exceptionally well with it despite his motor challenges. He loves going to class and loves practicing the moves, even if he doesn’t do them just quite right. I think it is going to be a great, great thing for him!

As for upcoming appointments, we see the pulmo next week and I don’t foresee any changes. Endocrinology is soon after, and I don’t see them doing anything either. The cardiologist will be seeing him in September and the plan is to stop his Viagra upon that echo pending no changes for the worse, and then do a follow-up cardiac cath a couple of weeks later to see if he can maintain with no pulmonary hypertension. He’s still on O2 at night since he drops his sats into the 80s without it, so that will be our only treatment for the pulmonary hypertension if he “passes” his heart exam. His ASD is still getting smaller with time, so we will continue to keep an eye on it but it is not a major issue at this time.

The question I have for any of you folks with kiddos with paralyzed vocal cords… Have the docs tried the injections with your child? The spacer? Anything else? That is the next issue I want to tackle this year or next, medically, as Dax wants to talk and wants to drink and he needs all the help he can get. Any input? Advice? Our ENT has called Dax a “hornet’s nest” and he “doesn’t like to kick hornet’s nests” when he doesn’t have to. He doesn’t have to live with said hornet’s nest or have to worry about his development like I do. So, thoughts? What’s worked? What hasn’t?

As for my sweet, sweet TyTy, he will be two in July and he is STILL. NOT. TALKING. Nothing, nada, zilch, zip. Every now and then he’ll say something that we think might be a word, but then he never, ever says it again and we start thinking we hallucinated the whole thing. Couple his vow of silence with his love of eating mulch, topsoil, dirt, rocks, and any other earthy material he can find lying around, and I’ve begun to really get worried. I took him back to the ped last week to have some bloodwork done and she wanted to do a developmental exam of sorts… And after all was said and done she thinks Ty is completely normal and healthy and extremely bright and curious and quirky, and he will grow out of this silliness over time. She also noted he is very hard-headed (and we have absolutely no idea where he gets that from.) She is sending him in for a hearing test just to be sure, but really just thinks he’s one of these kids who is just busy, and it doesn’t help that his role model is a three year old who doesn’t talk much. As for the love for all things unedible? He doesn’t have pica with any other items, and doesn’t mouth objects, he just likes to eat dirt and rocks. His levels looked good, so we’ll just keep him on vitamins and try to reinforce not eating non-edibles, and she thinks he’ll grow out of it soon. I hope so! He’s gaining weight so fast and I’m not sure if it’s fat and muscle or just rocks in his tummy.

Ty’s still getting early intervention services and he’s supposed to start speech therapy this month. Hopefully he’ll soon decide that he can talk, and hopefully when he does decide to talk it will be all nice things that I want him repeating, and not the terrible things he hears on a daily basis such as “If you don’t get your hands off of your wiener I’m going to chop it off and feed it to the dogs.” Not that I would ever say anything like that. Ever.

Ever.

Prayers needed for a micro-preemie friend!

2011-05-20T08:30:00.000-05:00

Hi all, I have an urgent prayer request for one of our favorite micro-preemies. Braden is a three year old former 24-weeker, and he, like Dax, survives his twin sister. Braden has beaten so many odds, and he has just blossomed since having his trach removed a few months ago. He even started tae kwan do classes last week! But now, Braden is lying sedated in the PICU at Vandy Children's, intubated, and fighting pneumonia and a cardiac issue that the doctors haven't gotten figured out yet. There are so many questions and so few answers right now and the family covets your prayers of healing for his lungs and heart as well as prayers for their strength and wisdom for the medical professionals.

Vandy has a free, quick and easy e-card service that allows you to personalize. Card and send it to Braden's room. If any of you have ever been there you know how important words of encouragement and faith are appreciated... You can use this link to send Braden a card... He is in room 5423.

http://childrenshospital.vanderbilt.org/interior.php?mid=1985

You can also follow their updates and offer support on the family's blog, http://braden-kaleigh.blogspot.com/.

Thank you all so much for the prayers! This is a NICU parent's worst fear, and they're living it right now.

Happy Mama's Day!

2011-05-08T10:33:00.001-05:00

Happy Mama's Day!

Happy Birthday to Daximus Maximus!

2011-04-04T23:03:00.000-05:00

Oh sweet boy, how fast three years has gone by. What an enormous blessing in a teeny, tiny package!

Happy 3rd birthday to our angel!

2011-03-23T22:22:00.000-05:00

How can it be possible that three years ago today we gave birth to our princess? And how can it be possible to love that little girl so much?

Happy Birthday to our Aubrie Angelina. I hope heaven had one amazing party for you today!

'Twas the Night After Discharge

2011-03-04T19:59:00.000-06:00

I was going through some old files today and found this and I had to share. I wrote this in December of 2008 right after Dax came home and completely forgot about it. Tonight I have laughed and remembered!

THE NIGHT AFTER DISCHARGE

'Twas the night after discharge, and all through the house

Not a creature was sleeping, except for my spouse;

The supplies were scattered all over the floor,

And we had already made five trips to the store.

Our preemie is tucked warm and snug in his bed,

With cereal and bananas still caked to his head.

He had Viagra at 2 and Lasix at 4,

So I attempt to take a shower before he’ll need more.

When from my son’s room there arose such a blaring,

I ran from the bathroom, completely naked and swearing.

His O2 sat monitor is alarming like mad,

But I find he’s just sweat through the only Posey he had.

I finally secure his foot in a fancy new way

With some great tape we lifted from the hospital that day.

I see it’s now time for his next round of meds,

And he’s due for his suctioning to clear out his head.

And let's not forget that upcoming fight

We have to have over the Pulmicort each night.

A quick change of the clothes from the Great Flood of Lasix

And some new sheets, too, since he’d covered his basics.

We return the all the phone calls from worried well-wishers

Wanting to check on our guy... And see homecoming pictures!

“Hi Dad!” “Hi Preacher!” “Hi Friend!” “Hi Mother!”

“Hi Grandma!” “Hi Uncle!” “Hi Aunt!” “Hi Brother!”

“We’re all doing great, and Baby is sleeping.

Oh wait, I must go! The apnea monitor is beeping!”

I fix his tiny cannula for the 900th time

With 17 pieces of tape from his blue nose to his spine.

I hook him up to his overnight continuous feed

And go sit for a moment for some rest that I need.

I check him once more before I lie down in bed

And find him covered in formula from his feet to his head.

Instead of him resting while his calories are fed

His food pours out through the $&%# open med port, instead.

So I clean him and his sheets and retape him once more

And snuggle again with this puny boy I adore.

I check all the equipment and I say one more prayer,

And I sneak a quick sniff of his formula-flavored hair.

I say to myself as I walk out of sight,

“Thank God he is home, but I need Xanax tonight!”

By: Daxton's mom

Adventures in potty training... Take 11

2011-02-28T21:57:00.000-06:00

In a moment of hopeless optimism, today I purchased some big boy potty seats to fit on the big people potties. You got it folks, we're going to try potty training again. You may remember our last attempt was not super successful, and honestly we haven't even really tried since then. But that changes... tomorrow.

As for tonight... Tonight I put the big boy potty seat on the big people potty and decided to give it a whirl.

I called Ty over and pulled his pants down, and stuck my hand in poop leaking out of his diaper. I wash my hand, clean his butt, deal with the poopy diaper, and help him on the potty. We sing the potty song for a few minutes and then I let him down. He peed on my foot almost immediately. I ~~threw him~~ placed him back on the potty and he finished pee-peeing in the big boy potty! Woo hoo! Success! And then I sent him running on his merry little naked way.

After that, I was feeling cocky, so I stripped down big brother and put him on the big boy potty and commenced with the potty song singing once again. I was unable to finish the song as he and I had an ongoing argument regarding whether his boy bits should point down into the potty or lie on the seat. (This is a problem only for my child on Viagra.) Eventually I got tired of playing whack-a-mole and sent him on his merry little naked way, too.

So, there's still some work to do. But maybe March will be our lucky month.

Sometimes God is an Indian giver

2011-02-18T16:13:00.004-06:00

In 1993, not long after my 13^th birthday, my 15-year-old cousin died of a self-inflicted gunshot. His mother found his body. I remember riding my bike to the church and crying on the steps, knowing that God heard me and that Justin would live. Six months later, my 80-year-old grandfather died of cancer. I remember, even at 13, I recognized that death is always sad, but it is not always tragic.

Justin’s mother never recovered. She developed cancer and died several years later on Christmas Day. I remember thinking how happy she must have been when she touched his face again.

Through the years the majority of funerals I’ve attended have been for 70 years+ great aunts and uncles or grandparents. They’re sad, and we miss them, but nothing ever had the gut-wrenching heartbreak there was when we lost Justin. It wasn’t just the loss of a person we had known, it was the loss of what he could have been and what he should have been.

In early 2008, we buried my Granny. She’d lost her mind and body to Alzheimer’s and no longer knew happiness or the ones she’d loved. She had buried two husbands, two children, all her siblings, and a host of assorted friends and family, and she was ready to go. A few short months later we gave birth to Aubrie (named after my grandfather who passed in 1994) and subsequently laid her to rest.

I never knew Aubrie other than her flutters in my tummy and her acrobatics on the ultrasounds. I never held her in my arms while she was alive. I never watched her sleep. I never got to wipe her tears, or even see her fused eyes open. But she was ours. And she was our future. She was a one-pound ball of potential and hopes and dreams and unconditional love and acceptance. And then she was gone.

There’s this club you’re initiated into when you have a child die, whether she’s not even born yet or 60-years-old. We share a common respect for life and wage the internal battles you can only fathom if God gives you the most precious gift and, then, takes it back. Some parents get to watch their children die slowly of diseases they can’t beat, all the while begging God to spare their child… anything, God, if you’ll just spare my child… Then there’s the children who are just gone in an instant, and the parents are left to forever remember that their last words to their child were said in anger or frustration, or that they didn’t make it to his last ballgame, or that they didn’t realize to cherish every single moment because they didn’t really know it could be the last.

Since joining “the club” three years ago, the only funerals I have been to have been for children. We’ve met too many families who’ve watched their children be stronger than any child should have to be as they fight some illness they didn't ask for, only to bury them days or months later. And then there was a cousin we lost in a one-car accident in September, full of life, just a month shy of his 18^th birthday... and it never gets any easier. Once you’ve felt the pain of losing your own child, each child you hear of who dies is another twist of a knife buried in your soul, another kick in that empty place in your heart. Once you’ve lost a child, you truly understand every child is precious. Every child is a ball of potential and hopes and dreams and unconditional love and acceptance. You can no longer hear a story about a child with cancer and simply think, “Oh thank you God for protecting my child,” because you have some understanding, no matter how far removed, of that child’s mother’s pain. You can no longer hear of the suicide of a teen boy and simply think “Thank God that’s not my child,” because, in a small way, it is your child. Another twist, another kick.

Early this morning I received a text I was not expecting, and it is with great sadness I report to you all that Baby Bella has passed away today on her nine-month birthday. Her mother was there and held her as she passed. Bella fought and overcame and surpassed and amazed… and now she is gone. I don’t understand why. I don’t understand at all.

The one lesson I have finally internalized after three years of watching parents bury children is thank God we had them. Thank God for the one day, for the one month, for the nine months, for the one year, for the 18 years, or for the 48 years. Thank God for giving us the most precious, amazing children… Children who taught us more lessons in their short lives than we ever knew we needed to learn… Children who were able to change lives just by existing. How empty and sad our lives would be if they had simply never existed. We would have avoided the pain but would have never had the joy… and that would have been a much worse fate.

But it doesn’t stop the pain or the longing, and it doesn’t fix that wound deep inside you that never, ever heals.

Please keep Bella’s family in your prayers as they begin to navigate the ins and outs of this club no one ever wishes to join… and never, ever take your own precious gifts for granted.

Oh my, it's a blog post!

2011-02-16T21:52:00.001-06:00

Yes, I know. I'm a bad blogger, a bad mother, a bad American. I have been pulled so many different directions lately playing catch-up, putting out fires, and wiping butts, that I have neglected that which is really important in life... Blogging. And I miss it, I really do. I miss sitting at my computer and enjoying it and not just working on paperwork until my eyes bleed. I miss sharing my boys and their idiosyncrasies and my fabulous, fool-proof, easy-peasy parenting tips that make other parents' strategies pale in comparison (ha!) I miss reading the blogs of others and catching up on how their amazing little kiddos are doing. I miss... Sitting. And thinking. And finishing.... anything. Oh well, those days will come again I suppose.

My last update was in December I think, so even though it seems like Dax should have his license and Ty should have facial hair, we actually haven't had that many changes. Dax had his adenoids out at the end of December and that was followed two days later with a super-fun adventure at my mom's in Po-dunk, MS, that involved a little blue boy and some very nice, understanding paramedics. He had a few apnea spells for about a week after that, and then everything leveled back out again. The good thing about having his adenoids out? Other than that first week after, we haven't had any airway issues. The bad thing(s) about having his adenoids out? A.) Adenoid breath smells worse than bulldog farts, and B.) when they stop snoring, you can't hear them breathing at night and that makes for one super-jumpy, sleep-deprived mama.

Other than that, Daximus is just plugging along. He had an assessment with the school system on Monday. They were appropriately enamored with him, and he seemed to do okay (but not great) on the tests. He did, however, show them how outrageously long his attention span is, and that he knows his letter sounds, and how smart he is by demonstrating tricks such as, when presented with a red block and asked "what color?" ("red" is very hard for him to say,) he put down the red block, picked up a green one ("green" is much easier for him to say,) and said "geen."

(McGuyver pulled a similar trick with his early interventionist a few weeks ago... She had 10 letters out and asked him to give her "W." He did. A few tries later she asked for the "M." He picked up the W, turned it upside down, placed it back in its spot, then picked it up and gave it to her. You can't argue with that. ;P)

I absolutely, positively cannot believe he will be three in a little over a month. Not possible.

So my not-so-little boy Tyler runs everywhere he goes and gives the best kisses and hugs in the world, and loves Elmo, cookies, cars, and his wiener. Aaaaaaand, he's not talking yet. Not even a little. We had him evaluated last week for early intervention and, ding ding ding, he has enough of a language delay that they're concerned. I waffle back and forth on whether I'm worried or not. On one hand, he's not even two yet and he's so far ahead physically... He's already walking down the stairs holding the rail and running everywhere he goes and his balance may possibly be better than mine. He has no signs of sensory issues other than a strange fascination with firmly pushing items against his chin (so weird) and using his fingers to feverishly blend all his food items into smithereens before he eats it, and those are more quirky than interfering. On the other hand, he's supposed to be my "normal" kid, and dammit, I just want him to start acting like it. I mean, he's got totally normal people to learn from, right? Right?!? Anybody?

Ugh.

And that's really all that we've had going on. Other than, you know, everything else.

So this brings me to an idea I had yesterday, and if I can figure out how to do it tonight I will. If not, then maybe sometime soon. Or not. But it hit me Monday when the assessor reminded me again of how "scattered" Dax's skills are... And then again when our early intervention coordinator told me how "scattered" Ty's skills are. And then again when I remember how my mom always said how "scattered" I was... And again when I realize just how "scattered" my life is now...

I mean, really, I always heard it was a balancing act... But it's not. There is no "balance" during this stretch... It's a scattering of as much as you can toss in as many directions as you can toss it, and a sincere hope that enough gets into all the corners of your life that need it. A hope you scatter enough water to put out the fires, and enough attention to nourish the areas that need love and growth.

I'm scattered.

And that, my friends, will be my new blog name. What do you think?

Just showing off a little...

2011-02-02T19:02:00.002-06:00

Dax showing off... His smarts and his booty :)

Didja miss us?

2010-12-27T23:21:00.002-06:00

My goal for tonight: a real life, honest to goodness, for real update on my two little guys :)

I'll start with my little chubbo tubbo.

Mr. TyTy had his 15 month checkup today and he's weighing in at almost 27 lbs and he's 32 inches tall. The doc says he looks perfect! He's a little behind the curve in his verbal speech, but he does sign a little bit and has no problems communicating his wants and needs with great enthusiasm and volume. Physically he's ahead of his peers. He's actually trying to walk down the stairs now instead of crawling, which is a little hard on my ticker... But he always holds on to the rails :) He's an eater and a drinker and a pooper and a runner... And he gives the best kisses ever. In fact, he kind of likes to make out. I'm warning you now, don't let this boy date your daughter!

And now on to my skinny mini.

Daximus Maximus is weighing in somewhere around 26 lbs now and he was 33.5 inches at last check. He is quite the eater and loves a variety of foods although he still doesn't chew or manipulate the food as well as we'd like and we still do all thin liquids via tube. He is making progress in all his therapy areas and we're about to start evaluations to determine what services will be appropriate for him when he ages out of Early Intervention and into the school district in April. He still has some significant delays in speech and OT areas, but his mobility is improving daily. He still falls... A LOT... but not as much as he once did. OT-wise he's catching up with his pointing and grasping but still has more catching up to do. ST-wise... Well, speech-wise sometimes he freaks me out a little. Dax is making slow progress with expressive verbal language, although he is making progress. He does best with repeating rather than spontaneous. His spontaneous speech is usually squeals or repetitive syllables that may or may not have any meaning. He's really gotten good at "copying" the squeals and screams of characters on TV, to a degree that it's creepy sometimes... And thanks to a certain Leap Frog DVD, he can now recite most of his letter sounds in exactly the same manner they do on the DVD. That's a little weird, too, to have a 2-year-old that, when presented with a letter, can tell you what sound the letter makes (but can't tell you that a cat says "meow.") His receptive speech is phenomenal, and he can identify his shapes, colors, letters, and many items. He's also able to match items to similar items (i.e. a red car to a yellow car) with pretty good accuracy.

Dax's skills are... Different. His brain seems to work in a manner similar to many people I've worked with who have autism, yet he has an ability to generalize that I haven't seen in those same people. His visual memory is amazing, and he can learn a sign today and still know that sign 2 weeks from now, even if he doesn't really know what the sign means. He verbally has a hard time mimicking others but physically he attempts to model behaviors he enjoys, like trying to copy a piano player's hand motions. He's very social and laughs and smiles so much and gets jealous of his brother and misses him when he's gone...

His brain is just so different than that of anyone else I've ever met. He really does have a beautiful mind, in every sense of the word. I'll be pushing for neuropsych testing as we do our evals preparing for school, as he is such a good learner in so many areas, and I want to know exactly how we need to be teaching this amazing little screwed-up brain of his...

And that's my update in a nutshell.

Dax's adenoids will be coming out Thursday, so any prayers would be appreciated for everything to go off without a hitch. Also, my dad has been in the hospital since Christmas morning due to some ongoing seizure issues, so any prayers for the seizures to get under control and for him to snap back into reality would also be appreciated.

I hope everyone had a fantastic Christmas, and I wish you all an amazing new year!

And now, some long overdue pics!

Santa's got a lap full of nice boys :)

School pic

Dax modeling his new glasses (Miraflex frames are AWESOME!)

TyTy drowns his post-shot sorrows in a strawberry sucker.

Love y'all!

2010-12-24T20:58:00.001-06:00

Ty just ate Santa's cookie.

Aubrie's Angels... What we're doing.

2010-12-17T22:53:00.002-06:00

So, I sat down with a knowledgeable friend this afternoon and we went through our list of names and matched up some very special kids with the items we currently have. Because of YOU, there will be a 1-year-old transplant survivor who will be getting all his sensory and developmental needs met this Christmas. There is a 2-year-old visually impaired girl with autism who will be getting a variety of toys suited perfectly to help her improve her functioning level. There will be a 3-year-old boy with cerebral palsy who will be getting his first tricycle, fully adaptable to his needs, along with other items to help him improve in all of his deficit areas... A 2-year-old girl who has survived a deadly condition and 3 heart surgeries... In total we will be supporting 14 (maybe more by the time we're done) very special children with very specialized needs, along with some of the siblings who also have delays. Each child we're supporting will be getting big toys, small toys, books, puzzles... you name it... whatever it is they need to thrive this year. All made possible by YOU. Wow. If you're not in the Christmas spirit yet, try to imagine for 1 minute what it will be like at their houses for Christmas :) Wow.

Thank you all so much for making this happen!!!

Aubrie's Angels gift collection: Day 14

2010-12-16T20:26:00.001-06:00

8 days left and... 20 gifts over our goal!!! What a huge blessing!

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Aubrie's Angels gift collection: Day 13

2010-12-15T20:16:00.001-06:00

9 days left and... 14 gifts over our goal!

It's not too late!

2010-12-14T23:28:00.000-06:00

Hi all! First of all, thank you all so much for all the gifts that have been donated to Aubrie's Angels this year! when I set the goal of 100 gifts I really thought I was overshooting quite a bit... But in 12 days we're already at 103 gifts donated! What an awesome outpouring of support! I'm feeling extremely humbled and abundantly blessed :)

We still have a few days left to go, but time is running short. If you've thought about donating but just haven't yet, I have an amazing friend and fellow preemie mom (her daughter Becca was a 13oz-er!) who is an Usbourne book dealer, and right now through Thursday she's taking donations to buy books AT COST to donate to these special needs kids who could benefit so much!

Please visit her blog here to find out more!

Thanks again everyone for your ongoing support... And I promise there will be a real-life update coming one day if I get to sit down! :)

Aubrie's Angels gift collection: Day 12!!!

2010-12-14T21:31:00.001-06:00

10 days and.... The sky is the limit!!!
103 gifts collected as of today, and more are on the way! I am in awe of everyone's generosity!

Aubrie's Angles gift collection: Day 11

2010-12-13T19:19:00.001-06:00

11 days and 19 gifts left to meet our goal! Holy cow we're almost there!!!

Aubrie's Angels gift collection: days 9&10.

2010-12-12T15:00:00.001-06:00

12 days and only 25 gifts left to go to meet our goal!!! Amazing!!!

Aubrie's Angels gift collection: Day 8

2010-12-10T20:58:00.001-06:00

Have I told you all lately how amazing you are?! 14 days and 31 gifts left to go!!! We're almost there!!!

Aubrie's Angels gift collection: Day 7

2010-12-09T21:18:00.001-06:00

Holy cow folks! 15 days and... Wait for it... 44 gifts left to go! We passed the halfway mark!!! You guys are amazing!!!

Aubrie's Angels gift collection: Day 6

2010-12-08T20:12:00.001-06:00

15 days and 58 gifts left to go!

Aubrie's Angel's gift collection: Day 5

2010-12-07T20:05:00.001-06:00

16 days and 66 more gifts to go!!!

Aubrie's Angels gift collection: Day 4

2010-12-06T20:48:00.001-06:00

83 gifts and 17 days to go!!!

Aubrie's Angels gift collection: Day 3

2010-12-05T21:09:00.001-06:00

90 gifts and 18 days to go!

Aubrie's Angels gift collection: Day 2

2010-12-04T18:03:00.001-06:00

93 gifts and 19 days to go!

Aubrie's Angels

2010-12-03T20:57:00.001-06:00

Alrighty folks, I am just super excited over a new adventure I'm undertaking, and I want YOU to join me! What better way to celebrate Aubrie's life than by giving to other children in her honor? And who better to give to than children with special needs?

Aubrie's Angels was born yesterday following a talk with Team Baby, as we rehashed just how good our kids have it... And here we are at Christmas focusing on buying more stuff for our kids who have everything when there are so many kids with special needs out there who don't have the sensory and/or developmental toys and equipment they need to reach their maximum potential.

So, here's the plan, folks! Starting right here, right now, my goal is to collect 100 sensory and developmental toys to help give some special kiddos a Christmas that will make the season brighter and help them learn and develop over the course of the next year. This is my trial and error year and I'm basically winging it at this point, but I'm coordinating with our local early intervention program and pediatrician's office to pinpoint some local families with kids with special needs and parents who want to help but just don't have the money to provide everything their child requires. (No HIPPA violating, scouts' honor.)

So, you wanna help? I'm open and willing to any toy donations (please, no money!), or, if you feel so moved, please locate a kiddo near you that you can help this holiday season. 'Tis the season for giving, folks... Hope and potential!

If you're interested in contributing, please email me at molliesheppard@att.net for more information!

Aubrie's Angels' gift collection: Day 1

100 gifts and 20 days to go!

Can you believe it?

2010-12-03T12:00:00.001-06:00

Two years ago today we brought home an eight-month-old little monkey who turned blue a lot and alarmed a lot and went to the doctor a lot.

We were scared shitless.

What an amazing two years it's been.

Happy Two Year Homecoming Daximus Maximus!

Mental diarrhea of a special needs mom

2010-11-26T23:54:00.000-06:00

I worry that I don't push you hard enough. I worry that I push you too hard. I worry that I see you differently than others do. I worry that others won't recognize your potential. I worry that I expect too much. I worry that I sometimes don't expect enough. I worry that you'll never understand how amazing you are. I worry that I'll over inflate your ego. I worry that I force you be too independent. I worry that I don't expect you to be independent enough. I worry that one day you just won't wake up. I worry that one day you'll stop breathing and I'll be there but I won't be able to fix it. I worry that one day you'll drink and drive and have an accident. I worry that other kids will make fun of you and you'll believe them. I worry that you'll feel inferior to the kids who are bigger or faster. I worry that you'll feel like we love your brother more. I worry that your brother will feel like we love you more. I worry that one day you'll think maybe you weren't supposed to live. I worry that you'll smoke. I worry that you'll be the last kid picked. I worry that you'll think my love for you is dependent on your abilities and successes. I worry that you'll take your talents for granted and mourn your weaknesses more than you should. I worry that your teachers will pigeon-hole you and not recognize your strengths. I worry that some girl will break your heart one day. I worry that you'll make the same mistakes I did. I worry that I'll obsess over making you eat and that you'll wind up overweight. I worry that you'll get cancer from all the radiation we've exposed you to. I worry that I protect you too much, and not enough. I worry that one day I'll push too hard for the doctors to do a procedure, and it will not end well. I worry that I'll sit quietly and not push the doctors, and it will not end well. I worry that you'll get hurt playing football. I worry that you'll think your best isn't enough. I worry that you'll be bullied in the bathroom at school. I worry that one day you'll go in the men's room alone. I worry that you will get some girl you don't love pregnant. I worry that you'll be infertile from all the xrays. I worry that I am setting you up for failure. I worry that I am doing everything wrong. I worry that I'm not doing everything I can.

I worry.

So there's some good news and some bad news

2010-11-16T22:16:00.000-06:00

Dax may have had a seizure today. His nurse went to wake him up from his nap to get him ready for therapy, and she noticed he felt warm. When she tried to rouse him he would not wake up and would only grind his teeth and twitch. His eyes opened but he wasn't focusing on anything. I was already almost there to take him to therapy, so I drove him straight to the local ER. THAT was a looooooong drive.

After about an hour he began looking around a bit but he still wouldn't respond to his name. He finally reached his arms out to his daddy when he leaned to pick him up, and he was finally able to sit up. As far as testing goes, his temp was 103.0 rectally (high, but not that high), sats were 94ish (a little lower than norm for his awake sats), the urinalysis was clean, the CT looked like... Dax's brain... but with nothing acute, the chest xray was normal, and the bloodwork was clean. So, it looks like we're left again with a possible febrile seizure. And this time I think that might be right.

We're home now, and Dax is a little lethargic and just a little spacey, but he's back :) Blue lips are scary, but I think looking into your child's eyes and seeing no signs of awareness is one of the scarier experiences we've had. I might just give that boy Tylenol every 6 hours until he's 12.

On a brighter note, I just HAD TO share some good news :)

Since the last update, Sweet Baby has been in and out of the hospital and has had a handful of surgeries to correct airway and GI issues. (You'll just love that, since bio mom and dad have to be kept abreast of any hospital admissions, the bio mother has asked A.) If Team Baby was keeping Sweet Baby sick so the bio parents would look bad, and, B.) What Team Baby was doing to "her" baby to make him sick. Insert your own %^*$% here.)

At any rate, bio mom and dad have not shown up for visitation with "their baby" since June and July, respectively. That, in TN, constitutes abandonment. Couple that with a couple of arrests for possession with attempt to distribute, some evictions, some felonies in some other states, some false documentation, some unfinished community service, and a handful of more nails into their parental coffins.

And then there was the hearing today. The hearing the bio parents didn't show up for. The hearing the bio parents' lawyers didn't show up for, either, since their lawyers have dropped them as clients. The hearing before the same judge who's presided over every other hearing regarding our sweet little friend. Team Baby reports the judge appeared genuinely disgusted with the bio parents and he officially removed the option of Sweet Baby returning home with his parents from the table. What does that mean? There is only one option now, and that's proceeding with adoption with his real family :) Looks like justice will prevail this time. Now we can all just count down until it's official!!!

So, I'll close with Team Baby's ongoing public service announcement:

"If your eggo is preggo, don't smoke crack." :)

Love you guys!

2010-10-28T20:21:00.001-05:00

Dax knows his colors! (or just their positions on the book, but who's splitting hairs?)

Random Facts

2010-10-26T21:29:00.001-05:00

I'm long overdue for an update, I know, but I don't think it's going to happen tonight. I did have a plethora of fun facts to throw your way though, so here goes:

The boys' 1st Halloween party is tomorrow.
The boys both have colds.
They will miss their aforementioned 1st Halloween party.
Dax had a sleep study in September.
The sleep study showed mild obstructive apnea.
The doctor started Dax on Singulair.
Dax DOES NOT DO WELL on Singulair.
A subsequent xray of his adenoids showed marked enlargement, almost obstructing the entire airway.
EUREKA!
Dax has a Flonase nasal spray each day now.
He LOVES it.
He signs "more eat" when it's done.
He now wants to stick all his meds up his nose.
Ty loves taking meds now, since his big brother takes lots of meds.
Ty gives himself "breathing treatments."
They calm him down.
Ty likes to pick up Dax's syringes and suck on them.
Ty now also sticks the syringes up his nose.
We've begun a mission to fatten Dax up.
We're giving him olive oil via tube everyday now.
It's really helped his pooping.
There are 120 calories in a TBSP of olive oil.
I previously thought olive oil was healthy.
Next time I'll ix-nay the vinaigrette.
Ty really wants olive oil, too.
Ty REALLY doesn't need the extra calories.
Monday will be their last day of school.
They both love it and are doing great, but no Synagis this year.
Kids are little germ-mongers.
I adore Ty's curls.
He's developed a "poof" in the back that was completely unmanageable.
Until yesterday.
I found the solution in the ethnic hair care section.
It also works on blondes ;)
Dax knows his colors now.
Sometimes.
The boys haven't slept well since they've been sick.
I put TyTy in the bed with me last night and cuddled.
I LOVE cuddling with that child.
He's such a warm little teddy bear.
Cuddling with Dax now is a lot like cuddling a bony little worm.
With feet.
In my ribs.
And a butt in my face.
All in all, everyone's well.
I promise a better update soon!
And please keep praying for our friends!

2010-10-15T11:45:00.001-05:00

Jammin out to a jazz band at Vandy today!

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2010-10-09T16:36:00.001-05:00

Future all star!

More prayer requests...

2010-10-04T06:16:00.000-05:00

Hi guys. Quick post this morning with a few more prayer requests...

Please remember John Adam in your prayers. He was in a car accident Sunday morning and is currently paralyzed from the waist down. Please pray for healing and patience and strength and faith. He and his wife just celebrated their son's first birthday, and they have another child due very soon.

Please remember the family and friends of Kelley in your prayers. We lost Kelley from a car accident last weekend, and, although I have been working on a blog post about him I haven't quite figured that one out yet.

Please also say a few prayers for Braden. Braden's a special preemie friend who is admitting to Vandy today to have his trach removed :) He will likely remain inpatient for a few weeks as he recovers. Please pray for a speedy recvery for Braden as well as for his family as they juggle hospital time with their toddler and take care of their newborn.

And, of course, please continue to keep baby Bella in your prayers. She needs them now as much as ever!

Thanks again, as always!

Needing prayers...

2010-10-02T16:16:00.000-05:00

Please, please remember Baby Bella and her family in your prayers! Bella has had to go back on the vent and the doctors and parents will soon be making some big decisions. The next few days are crucial. Please pray for Bella's heart and lungs, for guidance for the doctors and nurses, and for strength and peace for her parents.

As always, thanks so much.

I didn't see this one coming

2010-09-30T23:43:00.000-05:00

In 2008, we were told by a neurologist that Dax would never walk.

In 2009, we were told by his PT that she thought he could one day walk, but he'd probably need an assistive device, like a walker.

A few months ago, we were told by Dax's PT that she knew he'd walk. Her goal was to help him walk correctly.

A few weeks ago, she told us he'd run and climb stairs.

Today, she told us something even better.

Today, as the PT went over the new exercises and stretches we will be working on in therapy and at home, she tells me that the therapy she's doing with Dax is very detailed compared to what she normally does. She goes on to tell me that she rarely works on such detailed specifics with children, and that she never, ever would have guessed in June that this is what she'd be working on with Dax in September. She tells me Dax has many, many small areas that need fixing and adjusting and fine-tuning, and as we fix one area there might be three other areas that pop up we didn't realize needed fixing, too. She tells me we'll keep plugging along. That's what we do.

She tells me, of course, that she could never, ever predict the future, and she cannot tell me for certain what will pop up next on our radar, and she cannot possibly tell me for certain what hurdles might fall along the way.

But then she tells me that, based on what she sees, and what she knows, and what she's learned in 30+ years of pediatric PT, that if he keeps progressing as he is, that one day, eventually, we will discharge. That Dax will no longer need PT. That Dax will be as mobile as any other child.

That may not mean much to you, but as a mother of a child I assumed would be in PT for many, many years, if not his entire life, I didn't see the "D" word coming. Even if it's a year or two down the road, I didn't see it coming.

Today I feel enormously blessed and humbled. How easy it is to forget.

Dax tricks, in case you forgot how cute he is ;)

2010-09-22T18:55:00.002-05:00

A tiny little update on a tiny little Sweet Baby

2010-09-21T19:45:00.000-05:00

Hi all,
Team Baby is back from Disney and they’re relaxed, rejuvenated, and ready to take on the world, one crappy parent at a time. Here’s the latest scoop:

The open adoption papers Team Baby worked so diligently at getting prepared and filed before they left for Disney? Yeah, nothing’s been done about them yet. For Team Baby’s lawyer to set up a meeting to discuss that option, either the biological parents’ lawyer must be present OR both parents must be present, and their lawyer has been indisposed and biological mom has been… Well, nobody really knows where biological mom has been. (I can tell you where she has not been, and that is seeing her son at visitation. She hasn’t shown up for a scheduled visitation since June, nor has his biological father shown up since the beginning of July. But I’m sure there’s a perfectly reasonable explanation for that.)

Apparently the biological parents’ lawyer has notified Team Baby that biological dad has stated intent to file divorce and seek custody of all four of his children as a single father, but this had been said before and is very likely just a ploy to buy more time before termination of parental rights is complete.

So, what are they looking at now? Theoretically, if biological dad filed for divorce today, it would take 90 days for the divorce to be final, and then the state would give him the opportunity to work a parenting plan as a single father to try to get custody of his kids.

The packet to terminate parental rights will be filed by the state this month. That being said, it will take about six months for there to be a court date to determine if the biological parents have officially used up all their (many, many, many, many) chances to be the parents, guardians, role models, and protectors of their four children, including Sweet Baby.

Technically that could leave about three months for biological dad to straighten up and work a plan. Team Baby is hoping it’s too little, too late, and too improbable, but it ain’t over ‘til the judge signs on the dotted line.

So for now they wait. And take him to his doctors’ appointments. And complete his ongoing home exercises. And get up with him when he’s sick at night. And get him to his many, many therapies. And love him.

And take him to Disney World…

Time for a roll-call

2010-09-14T22:51:00.002-05:00

So, I think it's time for another roll-call! I wanna know who you are, where you're from, and one thing you love (or don't love) about this blog o'mine. Please don't be shy! And, fellow bloggers, please share a little about your own blog. Even if I already know you, someone else might be looking for a blog just like yours today!

Because my friend Kathy hadn't seen me cry lately...

2010-09-10T19:45:00.001-05:00

...she told me about this song today... And I keep listening to it over and over. It could have been written about our Aubrie... who was just ours for a day...

*Really* listen to these lyrics. Wow.

Holy crap, an update!

2010-09-09T22:31:00.000-05:00

Yes, yes, I know. I'm a bad mom and a terrible blogger. I'm not sure how long it's been since I've done a real update but here goes...

As you may have gathered, I have not none, not one, but TWO walkers now! Dax started walking on August 6th and Ty followed suit on August 9th. Best birthday present EVER :)

Since then our favorite game is cleverly called "the walking game" and it consists of both boys taking turns walking from an adult to a stationary item, then returning to the adult. Since both boys like to play at the same time it often looks like a very wobbly Titanic meeting a very wobbly iceberg... and then Ty plops on his fat butt and cries and Dax falls for 30 seconds hitting every available appendage and head space on whatever furniture, wall, or floor to be found in a 4-ft radius.

It's fun :P

TyTy is just trucking along like a champ. He says "Mama," "Dada," "Nana," "Papa," and "Day-Day," and he signs "block," "ball," and "more." He's 100% on sippy cups now, and, although he loves his milk, he's slowed down on his eating some as he's hitting his toddler phase. At his 1-yr check-up he was approximately 75% for height, 50% for weight, and 90% for head circumference (I'm not saying he has the Mills head, but you can draw your own conclusions.) He's sensitive and loving and gives the best hugs and kisses... and has just developed the best personality. He's my little man's man!

Dax continues to amaze us all! He's now in PT twice a week, ST twice a week, and OT once a week. He's still in early intervention preschool two days a week and continues to do well. He's making small, consistent improvements with both fine and gross motor skills, but his language is where he's just making leaps and bounds right now. Hes made huge gains with verbalizations, with lots of squeals and good increases in babbling, especially with "C" and "B" sounds. He can say a small assortment of words and has several sounds and words he can imitate, and tries to imitate many more even though he's not quite on target. As far as signing, we now have the following words and phrases:

more
eat
drink
Mama
Dada
TyTy
car
poop
block
ball
help (his personal favorite)
elephant (his very close runner-up favorite)
up
I want
bye bye
all done
head hurt
Brown Mama
Dax loves Mama

There may be more I can't think of, and there are several signs in his repertoire that we have not translated to English yet, but he uses them consistently and with great fervor... Will let you know when we figure them out!

As for eating... This child has turned into a glorified garbage disposal. He still turns his nose up at fruit, but just about everything else is fair game if it's in small pieces or mushed... with mac and cheese, oatmeal, yogurt, and green veggies being his favorite... The more butter and/or cheese the better. And, seriously, when I say this kid can eat, I mean this kid can EAT. Like, until I want to puke for him...

But, if you watch him moving and shaking for a few minutes, you understand where those calories go... That kid is BUSY!

We still use the g-tube twice a day; one 250mL bolus (over an hour) of Nutren Jr in the AM, and one in the PM. We also flush with 7-10oz of water per day on average.

Cardiac-wise and pulmo-wise we're still maintaining at status quo, and we just saw the dentist who said our little green teeth look "great." (That's obviously a relative term!) We just had a sleep study with full EEG last night so we don't have the results back from it yet, but I'll update when we do.

Just as an aside, when I called our neurologist to tell him there was a sleep study coming up, I explained to him what happened in July and Vanderbilt's conclusion that we'd had a febrile seizure. He had me explain what happened one more time, and then told me that it didn't sound like a seizure at all; that if he had been seizing he would have most likely been rigid, not limp, and would have been having shallow breaths rather than no breaths at all.

So go figure.

At any rate, it's been relatively calm around here other than the normal hullabaloo... The little men and I were able to load up and go visit family in Mississippi over Labor Day weekend and we had the best time :) We were busy most of the trip and saw more family in two days than I've seen in two years, and everyone seemed appropriately enamored with my fellows... As it should be ;)

And I guess that's us in a nutshell!

I want to end by reminding you to please keep praying for Baby Bella! She needs our prayers now as much as ever!

Thanks, as always, for being so wonderful!

Best. Picture. Ever!

2010-09-04T16:08:00.001-05:00

Floppin' free after 3

2010-08-29T21:53:00.000-05:00

So, yesterday we started my latest endeavor into potty training Dax. I'll be the first to admit that he is not ready, and it's extremely difficult to teach pee-pee awareness to a child who has an almost complete unawareness of discomfort (unless it's boogers, which he can now go after with great veracity, or eye crusties, which he treats in the same manner.) The kid has never let us know when he was wet or if he has pooped, despite his amazing ability to create poop by the bushel.

(Seriously, if we could get him pooping daily, I think we could sell fertilizer.)

Sooo, yesterday we started "Flopping free after 3." I'm hoping that by losing the diaper and having him pee in his undies, he'll figure out wet=pee=potty and dry=YAY. So far, we got nada. But, it's only day two...

I say Dax hasn't learned anything yet, but his mother sure has! I'm including a non-comprehensive list below.

Things I've learned during Flopping Free After 3:

1.) Dax could have a squishy, stinky micro-preemie in his underwear and not care.
2.) Poop is much easier to clean up when it lands in a diaper.
3.) Dax and Ty can have fun in any puddle, anywhere. Even in the kitchen.
4.) I love my new steam mop!
5.) Carpet is new on my list of things I despise, somewhere between wallpaper and pedophiles.
6.) Little boy weiners do not stay tucked away in tighy-whities (or tighty-blueys or tighty-reddys or tighty-stripies or tighty grayies or tighty-elmoies, or any of the other types of underwear he peed all over today) the way that I thought they would. At least 3 times today he came walking towards me with an unexpected turtle head sticking out of the elastic band. It would be disturbing were it not so funny.
7.) Dax will fall off his potty chair 100% of the time when he tries to take off his undies while perched on the seat.
8.) There will come a time in every mother's life that she will have to say "Don't eat your waffles off the toilet."
9.) The toilet bowl is a handy storage space for all your brother's toys.
10.) Tiny little boy butts are sooooooooooo cute in big boy underwear!

Here's hoping that he catches on quick, because I may not be brave enough to try this again until he's 10!

Baby Bella

2010-08-26T22:59:00.001-05:00

I know I'm due for an update on my two big boys, but they're doing great and plugging along marvelously! It's busy, busy, busy at my house with two little walking (or, rather, falling) boys, but I wouldn't trade not one split second of it!

Tonight I'm going to pass along yet another prayer request for a very special, amazing little girl. Bella is a three-month-old 22-weeker and she extubated today! Please, please, please send up lots of prayers that she kicks her vent habit for good and can keep on making progress towards getting bigger, getting stronger, and getting out of the hospital and home where she belongs!

Click here to visit their blog and follow their amazing story!

A better life for Sweet Baby UPDATE

2010-08-25T22:34:00.001-05:00

One day I was at work sharing stories with a preemie mama friend of mine and ooohing and ahhing over how amazing our kids are, when a cute blonde chick I’d seen around and about, but didn’t know, came into the office to ask my friend a question.

“I’m sorry,” I said, “we’re just bragging on our puny kids.”

“Oh,” she said. “I have a crack baby.”

You could have heard the crickets chirping.

Chirp, chirp, chirp.

I think I may have said something really profound, like, “Ooooh…. Huh. Wow.”

I thought, wow, she looks fantastic for a crackhead! And I hadn’t even noticed she’d been pregnant. She must not have put on weight, you know, from all that crack. I can’t believe she’s so open about it.

And then I think, wait, maybe she’s just got a kid with issues and the doctors can’t figure out what’s wrong with it, and this is her attempt at humor?

Hmmm….

I was wrong on all counts.

So, I’d like to introduce you to my new friends, Team Baby.

Team Baby consists of Mom, Dad, Big Brother, and Sweet Baby. Mom and Dad experienced a lot of complications with their pregnancy with Big Brother, and have been serving as foster parents ever since.

A few months ago they get a call from their foster agency saying they’d be arriving at Team Baby’s house in two hours with an itty bitty, perfect, healthy baby boy… And all of a sudden, Sweet Baby became part of their family.

Except, Sweet Baby wasn’t actually all that healthy.

Team Baby was soon in Vanderbilt begging for answers to why the precious little baby was wheezing and refluxing and screaming and miserable, and they found out the ugly truth about Sweet Baby…

Sweet Baby didn’t get such a great start. Sweet Baby had a terrible introduction to life, actually.

It all began when his mother, strung out on crack, gave birth to him. At home. In the toilet. Where she LEFT HIM.

Thankfully his father, also strung out on crack, had enough sense to fish him out when he realized there was a child in the toilet. (Someone give him a Father of the Year award.)

Miracle of miracles, an ambulance ends up being called, and the child is taken to the hospital. The parents are subsequently brought up on charges of child abuse, and are later kicked out of the hospital while they were visiting due to stealing syringes.

After seven weeks in the hospital Sweet Baby was finally weaned off the opiates, benzodiazepines, cocaine, and marijuana he was born on and then dropped off on the door step of Team Baby.

Lucky for him. And lucky for them.

So, fast forward to today… Sweet Baby is now nine months old and is doing great! He is in therapy four days a week and routinely sees a number of specialists to help sort out all his medical issues. He has right side hemiparesis, severe reflux, and modified eating protocols. He has sensory issues and failure to thrive.

And according to Team Baby, he’s absolutely perfect.

But here’s the thing…

Team Baby is a foster family. They knew when they accepted Sweet Baby into their home that one day he may go back to his biological family. There are goals in Sweet Baby's permanency plan for Team Baby to adopt him if his biological family uses up all their chances...

You know, his biological family… The same family that almost never, ever shows up for their supervised visits with Sweet Baby. They’ve been scheduled for one two-hour visit each week for the past seven months (which would be approximately 60 hrs, give or take a few.) They (and by “they,” I mean “the father”) have been there for a meager 12 of those hours. When they do bother to come they show up late and leave early.

His biological family... The same family that recieved NO prenatal care for their child.

His biological family... The same family that attempted to steal syringes for drugs from the hospital while their son lie there struggling to live.

His biological family… The same family that, when told about all of Sweet Baby’s doctors and therapies, said “We don’t have time to take him to all those appointments.”

His biological family... The same family that, when the mother was told her son may never be able to use his right side said, "I need pictures of him, I have to get his baby book finished before he is a year old."

His biological family… The same family that will not provide Sweet Baby with the environment he will need to thrive and do all the amazing things he is destined to do…

His biological family… The same family who already had three other children in foster care when Sweet Baby was born. IN A TOILET. WHERE SHE LEFT HIM.

His biological family… The same family that will be in court today, fighting child abuse charges and hoping to get their children, including Sweet Baby, back.

I’m asking you all to please say prayers for Sweet Baby and his foster family over the next few days and weeks. His future is in God’s and the courts’ hands, and it’s impossible to predict how a case like this will play out. Sweet Baby deserves to be in a home where he will be loved and taken care of, and his foster parents have proven they can, and will, do everything in their power to do just that. They want nothing more than to adopt Sweet Baby into their family and give him the brightest future a child could ask for.

So please, please, please PRAY!

I wanted to post a picture, but DHS laws protect the identity of children in foster care… So here’s a picture of the back of his sweet little baby head (on a CLEAN floor in a child-proofed home), so you can get even the slightest idea of the cute little man you’re praying for!

Thanks again!

****UPDATE****

Team baby has passed along the following information regarding the hearing today and what it means... And what it means is continued prayers over the next few weeks and months that all goes as it should, and Sweet Baby stays put! (And notice that he'll be going to Disney World in a couple of weeks. That just makes me happy ;)

From Team Baby:
So, the update on court today is that there was an agreement made. The reason that DCS made an agreement is because they could not get expert testimony to state that his "issues" are the result of drug exposure and could be the result of meconium aspiration. So, they settled for dependent neglect. What does this mean for SWEET BABY??? Here is the answer. SINCE THEY [the biological parents] DIDN'T SHOW UP TODAY, DESPITE THE FACT THAT THEY WERE INFORMED THAT THEY HAD TO, the attorneys asked for a continuance on the disposition. THAT WAS DENIED!!!! They judge ruled that Sweet Baby's case, which had been looked at separately than his 3 sisters would be INCLUDED in the termination of parental rights petition that will be filed on September 16th (yes, while we are in Disney Word) In Tennessee, it is state law that if a child's parents have not made sufficient progress toward their perm plan in 15 months the packet to terminate rights will be started and filed. Don't get your hopes up just yet, these people still have LOTS of chances, and it can take up to 6 months to get a court date.

With the pending involuntary parental rights looming, we have a few choices:1. We can wait the 6 months to a year and fight this out till the bitter end.2. We can attempt to offer an open adoption agreement with the biological parents under our terms if the will surrender rights and we can move forward.

NOW, if they have rights taken from them, WE never have to deal with them again, but it can be many, many more months of pure hell! So, Dad and I have decided that we will offer the open adoption agreement. My brothers are an open adoption from a similar circumstance, so I do know what we are getting into and exactly what terms that we want. We have already sent the terms to Sweet Baby's attorney. She will be discussing them with his biological parent's attorneys prior to the meeting where they will be discussing the future of the sisters. The sisters are all in family placements, so the parents will never lose contact with them if they surrender. Sweet Baby is honestly the only one that they have to lose. With this agreement he will not disappear from their life, but the contact will be appropriate and again, under our terms. The bio parent's attorneys, at this point, will be urging their clients to terminate rights. SO, I have no idea what is going to happen in the coming months. This is going to be wild ride. Hopefully, in the end, we will have a baby boy that we can call ours forever! Keep praying!!

PS. Bio Mom had a miscarriage 2 weeks ago and they both failed the last drug test. LOVELY!

A tale of two ERs

2010-08-22T17:05:00.000-05:00

Well, on July 17th Daxton had his first ER visit. We all know what a craptastic experience that was.

On August 17th Daxton had his second ER visit.

This time, I'm "proud" to say, was over a 100% normal, typical, routine two-year-old-boy incident.

Dax fell and hit his eyebrow ridge on the side of the tub. I was worried about him hitting his head more so than the gash, but wanted to get the gash checked out, too.

Two months ago I would have taken him to the Vandy ER just to be sure... Just in case it was serious... Just to make myself feel better.

But not now. Not after last time.

I'm terrified now of taking my child, who, I can guarantee,will have stitches and broken bones his entire life due to his balance issues, back to Vanderbilt ER. Heaven forbid we get the same resident who we had before, or one just like her, or if his chart reads somewhere they suspected us of child abuse because my son with cardiac, pulmonary, and neurological issues tried to die.

Ugh, it makes me shudder.

So, we went to the local hospital ER instead. And you know what?

They were awesome.

We had a real-life doctor, one who has ER experience. One who has seen enough patients to know the difference. They treated us like normal people, they ooohhhed and aaahhhhed over how amazing Dax is, and they fixed him right up after only a short wait.

Come to find out, the doctor was not as concerned about the head hit, but more concerned with the gash. We ended up having it glued. Dax was such a trooper!

So, thank you Sumner Regional. We had a wonderful experience with you, and ~~look forward to seeing you~~ hope we don't have to see you anytime soon. But, next time we need an ER, we're heading your direction.

One of my favorite poems...

2010-08-19T17:10:00.001-05:00

Life in Five Short Chapters

CHAPTER 1

I walk down the street.

There's a deep hole in the sidewalk.

And I fall in.

I am lost. I am helpless. It isn't my fault.

It takes forever to find a way out.

CHAPTER 2

I walk down the same street.

There is a deep hole in the sidewalk.

I pretend I don't see it. I fall in again.

I can't believe I am in the same place.

But it isn't my fault.

It takes a long time to get out.

CHAPTER 3

I walk down the same street and there is a deep hole in the sidewalk.

I see it there, and still I fall in.

It's a habit.

But my eyes are open and I know where I am.

It is my fault and I get out immediately.

CHAPTER 4

I walk down the same street.

There is a deep hole in the sidewalk.

I walk around it.

CHAPTER 5

I walk down a different street.

By Portia Nelson

You Are Not Typical

2010-08-13T17:01:00.000-05:00

This world we’re in
is continually focused
on striving so hard
to be Average
and Normal.

But there’s nothing Average or Normal about you.

Since the first day
I saw your precious face
Your pretty eyes
Your beautiful soul
I knew.

There’s nothing Average or Normal about you.

Please always remember
In this world of bell curves
You’re Extraordinary
and Amazing
and Perfect.

For my Dax and my TyTy.
Love,
Mama

A little friendly competition between brothers...

2010-08-09T20:54:00.000-05:00

Alternately titled, how I'm going to lose that last 5 pounds...

Time, slow down... You're moving too fast!!!

It never gets old...

2010-08-09T19:31:00.002-05:00

Oh the sweet pitter patter of little (slightly drunken in appearance) feet...

My birthday present :)

2010-08-07T00:37:00.002-05:00

So I didn't really think anything could top last year's birthday present (the vasectomy :P) but it's officially been topped. As of 10PM on August 6th, my Dax is a walker :) Video to come!

Random Fact

2010-08-04T18:34:00.001-05:00

On a completely unrelated note, I now use Blogger in Draft which allows you to see, among other things, which posts are read most often, what time of the day I get the most hits, and how readers locate my blog in the first place. I find it absolutely hilarious that my blog, which primarily revolves around my premature son and his fat sidekick, is RARELY visited by people who googled the obvious topics. Noooo, I get, by far, more visits from people who have googled "How to neuter your husband."

And that, my friends, makes me happier than it should! :D

My Wal-Mart Epiphany

2010-08-04T18:15:00.000-05:00

Ever have one of those random moments when reality smacks you in the back of the head? As I was walking through the grocery store the other day I sneezed, subsequently peed on myself, and had an epiphany. (It was a very busy moment in time.) I’m getting dangerously close to my VERY late, late, late, late, late, late, late, twenties, and it all of a sudden struck me that my life is nothing, absolutely nothing, like what I had planned ten years ago when I was in my VERY late, late, late, late, late, late, late teens.

In fact, I’m living a life I would have never chosen. Not in a million years.

If you’d asked me when I was in my VERY late teens where I’d be in ten years, I would have told you who I was going to marry, what I was going to be doing professionally, and there would be no children, not until later on. I’d have money to boot and the perfect car and house and vacations. Although I wouldn’t have thought to mention it then, I’m relatively sure my VERY late teenager self would have expected my VERY late twenties self to shave her legs and brush her teeth everyday with no possible foreseeable exceptions…

If, in my VERY late teens, you’d have offered me a life that revolved around poop, bottles, and doctors’ appointments, I’d have told you no.

If, in my VERY late teens, you’d have offered me a special needs child with a twin who didn’t make it, and a fat little whiny infant who hates play hamsters and kazoos and cries when you look at him cross-eyed… Well, I’d have passed.

If, in my VERY late teens, you’d have offered me a job that pays the bills with little extra, an 8-year-old gas guzzler, and a relationship more complicated than most… I’d have asked for what was behind Door Number 2.

If, in my VERY late teens, you’d have said one day, ten years from now, me and my hairy legs and grown-out-and-turning-gray roots would be pushing a diaper-laden buggy through Wal-Mart and I would sneeze, and then subsequently pee on myself… again… and that it wouldn’t strike me as unusual… I’d have laughed at the pure ridiculousness of it and politely declined…

In fact, I’d have pitied the person who did live that life. I’d have thought that a life less than enviable. Maybe even a second rate life. Most definitely not one I’d choose for myself. I’d have been thankful to know that nothing like that would ever in a million years happen to me…

As I walked on through getting groceries that consisted of generic easy-to-chew-and-swallow foods that adults and toddlers can share and nutrient-packed food items that I don’t really like but I eat whatever the kids have left over, I thought about my life, and who I am today.

You know, my very, very, very, very, very, very, VERY late twenty-ish self…

And I think I have a life that others SHOULD envy. My VERY late teenaged self would have been wrong.

Really, what’s not to love about my life?

It’s truly an amazing thing, the paths we end up taking in life… We see the future like it’s a first-class flight where we buckle in, kick back, and watch an in-flight movie while we cruise where we want to go, when, in fact, it’s a cross-country road trip in a lemon with a broken GPS and a lot of hitch hikers. It’s maddening and frightening and uncomfortable and smelly sometimes, but it’s also delightful and beautiful, and it’s the idiosyncrasies and the detours that make it memorable and fascinating.

But I never really realized that.

But it was my Wal-Mart epiphany.

I think realizing that… that I am living a life I would not change… that my definition of “perfect” is much longer and more detailed than it once was… that happiness is not a direct product of having fun… will help me bridge that transition from my VERY late, late, late, late, late, late, late, late, twenties, to my VERY, very, very, very, very, very early thirties on Saturday.

Here’s hoping that my next ten years are as full of joy and beautiful detours as my last ten have been… and maybe this time around I’ll choose to spend a little less time on the interstate and be able to avoid a few more potholes.

But if I don't, it'll be okay.

Wasted paper...

2010-08-03T20:23:00.001-05:00

A waste of paper. The dummies are all super fertile!

TyTy's First Birthday!!!

2010-08-02T23:12:00.000-05:00

A day in pictures :)

Wimpy white boys unite :)

Super cute Cookie Monster cake from Sweet and Sassy

Ty's wish? More cake.

I love his onesie :)

Ty giving his favorite Sesame Street character a little sugar

Hmmm, this isn't half bad...

Not only was his face covered, this is also what his next 8 poops looked like.

Dax and Kins and the coke bottle that entertained them for half an hour

Not a big fan of public nudity... Or of having 7 lbs of cookie monster icing removed from his chubby little body.

Such a sweet boy! I can't believe he's one!!!

Letter I will be sending to Vanderbilt

2010-07-24T10:17:00.000-05:00

Some of you may have already seen my earlier draft, but here's my final draft that I will be sending to patient affairs and several other departments following our recent hospital stay. Please feel free to leave any input!

July 23, 2010

To Whom It May Concern:

I would like to take a moment to discuss my recent experience with Vanderbilt Children’s Hospital. I have had an overall dissatisfying experience despite the many wonderful facets of your institution, and I hope that, by sharing, I may improve the experience for other families in the future.

To begin, let me first tell you a little about my son. He was a surviving twin born at 23 weeks gestation who spent his first eight months of life in the NICU. He is now a curious, rambunctious two-year-old with multiple chronic medical issues. He, most notably, is diagnosed with pulmonary hypertension, atrial septal defects, broncho-pulmonary dysplasia, cerebellar hypoplasia, and a paralyzed vocal chord, and he requires supplemental O2, Viagra therapy, and a feeding tube in his daily life to maintain his health. We have scheduled, routine visits here at Vanderbilt with pulmonology, endocrinology, otolaryngology, audiology, and opthamology, and we routinely utilize specialists outside of Vanderbilt for cardiology and neurology.

I tell you all this because on Saturday, July 17, my son experienced a spontaneous apparent life threatening event of unknown etiology in our home, requiring me to resuscitate, and resulting in our first emergent transport, first ER visit, and first unplanned hospitalization in the 20 months he has been home from the NICU.

Upon arrival, the treatment team gathered information and began routine labs and a chest x-ray to determine what had caused the event, but the focus was quickly shifted to a thinly-veiled abuse investigation during which I was made to feel guilty until proven innocent.

I recognize and appreciate there are procedures in place to protect our children, and many times before I have been the one doing the investigating. I would have had no issues with the barrage of loaded questions or with my son being put through a full-skeletal x-ray and other exams, had someone simply said, “We’re sorry, this is standard operating procedure for any child with petechial hemorrhaging ,” or something comparable. I do, however, have a problem with being treated discourteously when there is overwhelming evidence to anyone who looks at the child, his behavioral responses, and his medical history, that our child is extremely well taken care of and remarkably healthy despite his chronic concerns, and I also take issue with being outright lied to about why the tests are being done in the first place. I understand that everyone is still feeling outrage regarding the pediatrician from Mt. Juliet who recently killed her adopted daughter, but every family cannot be blamed for one family’s very tragic, heartbreaking decisions. A little more communication, courtesy, and common sense could have gone a long way in making this already traumatic situation a little less stressful for us as a family, and I can only hope that every special needs family is not treated with the same manner of accusation and disrespect that we felt with our own special needs child.

Once the abuse allegations were put to rest, and the standard tests and an EKG came back normal, we were told we could go home. The doctors felt it had “probably just been a febrile seizure brought on by his current viral infection” and that he was fine to go home if I was comfortable. I was not comfortable. At that time, my son was still running a fever of 102.7-103.7 requiring ongoing Tylenol and Motrin, and he was experiencing infrequent, but present, apnea and desat spells. He was unable to eat food by mouth without coughing and gagging until he vomited. In addition to those things, please don’t forget my son had recently had a spontaneous ALTE at home that required resuscitation, and I was not content with him “probably being fine.” Listening to a doctor who said everything would “probably be fine” is why I now have a dead daughter and a son who’s had to fight so hard to live, so please forgive me for being a little extra cautious.

I want to add here that, as a mother of a chronic lung diseased child with cardiac issues, I am familiar with what is normal for him, and what is very much not normal for him. I know his breath sounds and his coloring. I know what my child looks like when he sats in the 50s or 60s. I know when I’m getting a false reading on the oximeter. I know how to tell by how blue my child is just how serious his current condition is. I am not an expert in all children, but I know my own child better than anyone else, and I know that, on Saturday, when I found him, he was not breathing and he was gray, nonresponsive, limp, and lifeless. I am not exaggerating the situation nor making light of it; it is what it is. That being said, I never felt as if anyone gave any credence to what I saw or did, as obviously I am just a mother, and one they had already labeled as a child abuser, no less.

My final complaint is the apparent lack of communication with my son’s specialists. When a chronically-ill child who has been medically stable suddenly stops breathing, it seems to me that consulting the child’s pulmonologist and cardiologist would be fairly routine steps in the treatment process, as well as possibly his ENT and neurologist as other potential diagnoses arise. I was extremely disappointed to find that, despite my verbal request to do so, my son’s cardiologist had not been notified of my son’s event or emergent hospitalization, especially considering she was on-call the weekend the event occurred. She instead came by after I alerted her to his hospitalization to do an evaluation of my son’s cardiac function based on her own concerns. My son’s regular pulmonologist also came by per my request after our attending had already offered to discharge us. Both specialists have been following my son since discharge from the NICU and have extensive knowledge of his history and patterns that could have been beneficial to the treatment process if utilized, and I would never have felt safe taking my son home following such a potentially devastating event without their input. I feel not seeking their input prior to attempting to discharge my son was medically negligent considering my son’s extensive medical history and the treatment team’s inability to determine a definitive etiology of the ALTE. I also repeatedly asked the team to contact the otolaryngology department to have someone come examine my son and make recommendations regarding any apnea and swallowing issues, and the team adamantly and repeatedly refused my request, instead opting to set up an outpatient visit the day after discharge. I did not find it safe or beneficial for any involved parties to return my son with an obviously nasty virus to the hospital to a waiting room filled with mostly well- and medically-fragile children, although I did follow through with the appointment as requested.

I would like to add, however, that despite my lack of satisfaction with much of my experience, we did receive excellent nursing care and care partner assistance during our stay, and I was surprisingly pleased with Katherine Shaw, the medical student assigned to our case. I very rarely have pleasant experiences with the residents, and that remained mostly true this visit, however, our medical student was honest with me each time she visited our room, and she exhibited an outstanding ability to work within the boundaries of her knowledge while still maintaining an air of intelligence, professionalism, and compassion. She also seemed more interested in gaining knowledge and experience than simply showing off that which she had already acquired, and that is a rare but welcome characteristic of a resident based on our previous experiences. Based on what we saw of her during our visit, she will potentially one day be the kind of doctor we would choose for our children, and it’s rare that I make that type of statement regarding a student, resident, or, to be completely honest, attending. We were grateful to have her on my son’s treatment team, and we feel she will be a great asset to your residency program.

Thank you for allowing me to voice my opinions on our stay. Hospitalization is never pleasant, but some very minor changes in how our son’s treatment was approached could have had a major impact on my feelings about this stay and Vanderbilt in general. At this time, however, I am left feeling disappointed, dissatisfied, and angry, and will in the future spend more time weighing the costs and benefits of traveling to more distant children’s hospitals in hopes of better service and commitment to the children and families served.

Thank you for your time, and for all the many good things you do.

Sincerely,

Mollie Sheppard, mother of Daxton Sheppard

Thoughts?

Going home today!

2010-07-20T10:58:00.001-05:00

Look, Ma, no tubes, wires, or leads!

2010-07-18T21:19:00.001-05:00

103.7 temp... but he's still one cool kid

Out of my hands.

2010-07-18T13:46:00.001-05:00

Soooo, God has such a funny way of reminding me who's boss...

Just when I get life under control... under my control... The Great Puppet Master in the Sky strikes again.

Little TyTy came down with a cold + fever on Friday evening, and on Saturday both boys woke up a little hoarse and puny. I dosed them both with a little Benadryl and Tylenol as usual, and we all curled up on the couch and watched ~~a little~~ a whole stinking lot of Sesame Street and napped. Both boys were pretty lethargic, understandably so with a cold and some Benedryl on board. Ty woke up warm again so I stripped him down and he was playing with his toys, and Dax finally woke from his nap on the bean bag right at lunch time. I was wiping down his little table where he eats when I looked back over at him, only to see he had laid his head back down again. "Daaaax," I called. "Noooo sleeping. We have to eat some lunch now!" and I went over to wake him back up.

When I leaned over to kiss his little face, I saw that it was completely gray.

I picked him up and shook him, yelling his name. He was so, so gray, and his lips were completely blue.

He just flopped, completely limp. He was not breathing. He was completely unresponsive.

And the rest, as they say, really was just a blur.

I yelled out for Shep, over and over. I laid Dax down and started administering rescue breaths. I gave him sternum rubs as I was doing it hoping to jar him back awake.

Shep called 911. He yelled at Dax to wake up as he gave the dispatch Dax's info.

I just kept breathing for Dax and shaking him and begging him to breathe.

And then he did. Praise God, he did. I don't know how long it took; I don't know when. But he did.

I ran upstairs with him and put him on his oxygen and pulse oximeter, and I held him. When I placed him on his bed so I could look at him, he was still so limp, and so unresponsive, and so... not himself. But he was breathing.

When the First Responders arrived he was stable, and after their assessments he and I load into the ambulance for Dax's very first emergent ambulance ride since the day I went into labor with the him and his sister.

It was also his first real unscheduled "sick" visit. Ever.

And all I could think, ALL I could think, was what if I hadn't checked... What if we hadn't been right there... What if, what if, what if...

Thankfully he became more at himself during the ride, and, though he was lethargic, he was acting like Dax again when we settled into the room in the ER.

A rectal temp read 103. The other labs are drawn, and xrays are taken. Dax takes a nap, and we wait for answers.

And now it's Sunday afternoon, and we're in a room, and we're still waiting for answers.

The best educated guess is Dax obviously has a virus that precipitated either a major pulmonary episode or a febrile seizure. Apparently there will be no black and white "this is exactly what happened" diagnoses.

I'd sleep a whole lot better if there were.

But, for now, we're going to hang out in the hospital a while, to wait, and watch, and... be thankful...

Thankful the Lord continues to control the strings.

Birth story numero tres: The Demon

2010-07-17T01:05:00.005-05:00

Since we're edging up on a very special birthday on July 30, I decided to finally finish a post I started about 11 months ago :) I never did tell you all about Tyler's original "birthday" and I think it's about time you heard it :)

So it was Wednesday, July 29, 2009, and I was under a lot of pressure (from those who did not have to push a big honking baby out of their respective vaginas) to have the baby on that particular day. Beth, Dax's home health nurse, wanted to win $1 for guessing the right date, and she had picked the 29th since it was both mine and Shep's and her and her husband's wedding anniversaries. My mother had told me under no uncertain terms that I had to have him before Thursday the 30th because that was most convenient for her, and my dear husband had told me that Wednesdays were most convenient for him. So I did what any reasonable person would do... I sat on my butt and squeezed my legs shut and told the baby to stay put. I don't do convenient ;)

But of course, I forgot that I have noncompliant children.

I didn't have a contraction all day, then around 3 or so I started having light ones.... But they were organized. 15 mins, 10 mins, 7 mins, 5 mins... They didn't hurt but they were there, and then around 9pm I started bleeding. We called our parents and packed our bags and got Dax squared away and headed to the hospital. The contractions were 3 minutes apart...

We get to the hospital and they check me and I'm dilated to 5. And the contractions stop. (I told you I have noncompliant children...)

I'm admitted anyways and they ship me to the labor and delivery floor. Shep and I walk for 45 minutes. Still no organized contractions, but when they do hit they hurt a little. Still not dilating more. My mom shows up and we all wait.

They asked me if I wanted an epidural... After having both the twins naturally, my answer was, without hesitation, oh hell yes!

I eventually got the epidural and then I took a nap in between IV alarms and people in and out... I was a little bummed that the contractions had stopped.

Except the contractions had not stopped. The epidural was just that good.

I should mention here that I love epidurals. Everyone should have one. They're amazing. I want one now! I could have an epidural baby every day!

At shift change the new nurse, Nurse A, walks in and starts to introduce herself, and then we both scream "AHHHHH" and hugged :) She was one of the nurses who took care of me when I was on bedrest on the high risk floor last year, and we love her and she's fantastic. We were so happy to have her!

Dr. L., or as I call him, Dr. R.(you'll have to figure that one out yourself), came in to see me around 7:45am or so and ordered a pitocin drip...

(Okay, some back story on the doctor. He was a brand new hire at my high risk OB, and I had just met him for the 1st time the week before. I was nervous because I was so close to delivery and here's this new doc... But he walks into the exam room at his office and introduces himself, and then says, "I speak Ching-rish, and you wirr probabry not unnastan moohs of wha I say." He was so cute and charming, and I liked him immediately (although "cute and charming" are characteristics I usually look for more in the one getting me pregnant, not the one delivering the baby!)

But I digress. And, I did not, in fact, understand anything else he said that day...

But we'll come back to him in a little bit...

So I'm still just lying around, hanging out with Shep and my mom, trying to figure out when the little monster would make his grand entrance. While we're waiting, two of our old friends from the NICU, Nurse B and the Speech Therapist, came down to say hello. Nurse B said she'd be honored to be in on Ty's delivery, since she was there for both my other two, and the speech therapist says she'd love to hang out, too, you know, in case of any speech therapy-related emergencies.

So I said, what the hell. Why not? And I'm not sure my vagina can perform without an audience, anyway. I'm fairly sure Dax's delivery was listed on TicketMaster.

So the doctor comes back and I haven't really progressed, so he decides to break my water. He does, and then asks me if it had already broken, because there wasn't much fluid.

I reply no, but then we figure it out...

A month prior I had, ahem, sprung a leak, that was checked and there was no amniotic fluid in it. Apparently over the course of the month my plumbing problems had become more interesting. Thankfully our Ty still had plenty of fluid left and all was well.

So then we wait some more.

FINALLY it's time, and my very meager entourage of just one doctor, one husband, a handful of nurses, and a speech therapist, gather around my hoo-haa and Nurse A tells me to start pushing when I feel a contraction.

So, did I mention how awesome my epidural was? They had to TELL ME when I was having a contraction.

I was able to push effectively except for all the times Dr. L kept repeating how "ruvvery" (ahem, "lovely") I was doing while I was pushing, which made me laugh and lose the pushing stamina. No telling how many contractions I missed because of that!!! :)

Then he'd say "Pooosh hhhaaadder," and I'd laugh again.

"Juss one moh pooosh," he said, about 5 "poooshes" in a row.

Finally, at 10:20AM, it's the big one, and I pooosh and pooosh and he says "Pooooosh harder, poooosh harder" and the baby squirts out and he says "Srow down you poooosh too haaaahd!"

And I cracked up :)

I must say, it was awfully nice to have a delivery where my biggest fear was pooping on the table in front of my friends. (They said I didn't. I hope that's true.)

At any rate, Nurse B and the speech therapist completed Ty's assessment, and they concluded he was 7lbs 7oz, 18.5" long with no speech-related issues and gave him to me while Dr. L tried to put my Humpty Dumpty back together again.

And I looked down at Ty in my arms, and I thought, "My lord, this kid looks like a garden gnome."

(Thankfully he grew out of that later:)

So, they cart him off and when I'm able, Nurse A and Shep get me up and help me to the bathroom, where I am able to fully understand the complete and total bloody mess I am. As Nurse A is helping me clean up, she looks up and giggles and says, "Do you think we can still be Facebook friends after this?" :P I told her she was officially from that point on my closest FB friend ever:)

I'll spare you the details of Ty's refusal to drink from the tap and the many hours I spent trying to get him to try. I will tell you that I expressed boob juice into a plastic hospital spoon, and that's how he drank it while we were there since he'd refuse to get it the old fashioned way and I refused to let him have a bottle and take the easy way out.

At any rate, two glorious, short days later, they ~~made us~~ let us go home with our TyTy... With no monitors or instruction manuals... (Although, I will confess to maybe putting the pulse oximeter on him a few [dozen] times the first few weeks. You know, just to be sure.)

And all was well...

And that's our story of Birth #3... Such a fun time :) I can't imagine a life without our precious little Ty!

Unbelievable

2010-07-14T20:03:00.000-05:00

Call me lucky, or sheltered, or both, but in my life, especially in the last few years, I've witnessed countless instances of selfless giving and unconditional love. I've watched parents give everything to keep a child who will never be "healthy" or "normal" the best life they can imagine, and I've watched people with amazing strength and patience fight to give homes to children of all ages, shapes, abilities, and sizes... Parents who may or may not have been able to give birth to biological children of their own.

I suppose it's my experiences with such unbelievably awesome people that make stories like this that much harder to swallow.

And it happened just a few miles down the road.

And the woman is a pediatrician. She took a vow to protect children, and DO NO HARM.

Unbelievable.

A ghost story

2010-07-12T22:21:00.002-05:00

Some of you may know that my mom and dad had a 100-year-old, abandoned house cut apart and moved to their property a dozen or so years ago, and then my mom spent several years tearing down walls and rebuilding them until she ended up with just what she wanted. After they moved in, mom started telling me about some strange occurrences, and they end up naming their "ghost" Lucy.

I thought, yeah right.

Well, after I spent one night there I became thoroughly convinced, and although I found it extremely frightening at first, over time Lucy became part of the family.

(Yes, you can call us crazy now. No, you don't have to believe me. Yes, this is really a true story.)

So, then one day I went to visit and I didn't hear anything out of Lucy my entire trip. It made me sad :(

And then I came back a few more times and didn't hear her those times, either.

And then a year or so passes and... nothing.

Mom reported she hadn't heard anything out of her, either.

We thought maybe she had finally been able to go home...

But then, when the boys and I were at Mom's and Dad's for our last visit, I'm pretty sure she was back :)

I was trying to get the boys settled for bed, and Dax was lying down and Ty was in my arms screaming bloody murder, when I watched the door to our bedroom open all the way up, then slam shut...

And then, nothing.
Which could, of course, mean 1 of 2 things...

1. Lucy felt like I had enough to keep me busy without her help...

or

2. She was more scared of Ty than we were of her :)

It could go either way ;)

My "once-weekly-but-now-I'm-lucky-if-I-write-it-monthly" update

2010-07-09T23:11:00.004-05:00

Sooo, the boys are in bed and I'm eating apple pie a la mode (in a bowl, since my friend Brenda says nothing "round" has calories, and this is the best I could do ;) and I'm going to see if I can belt out an overdue update before I pass out on my laptop! We've had a busy month or so, and that includes the TWO WEEKS I was finally able to take off of work for my first real vacation time in years that didn't revolve around a medical appointment or procedure or pushing babies out of my hoo-haa. So, it was niiiiice.

The boys are doing great! They're both just turning into little men right before my eyes, and it makes me so happy and so sad. Every now and then, I'll think, maybe it would be nice to have another itty bitty baby around the house... But that thought passes, and it passes FAST! :)

So here's the scoop:

I took Dax in about a month ago for his procedure to have his tubes in his ears replaced, you know the one I was so excited about because they weren't going to intubate him... Well, after anesthesia looked him over they told me they'd changed their minds and they were going to intubate him, after all. I understood their reasoning, but after all was said and done he had a really tough time coming off the vent and became very agitated as the sedation wore off, and it ended up being one very long, very un-fun afternoon. In the NICU, parents get very accustomed to seeing their child turn blue... But I was way out of practice on that one! During one of his bad episodes I was holding him up on my shoulder trying to get him to start breathing again, and I managed to catch his Mic-Key button on something and yank it out, subsequently leading to the emptying of all his stomach contents (which the best I could tell included mostly fluid and blood) into my lap. Thankfully, after about three hours he had calmed enough for me to change my undies and soon after he was keeping his sats high enough that I could cart him on home. It wasn't a majorly disastrous day, but it definitely wasn't the picture perfect procedure I had hoped for.

On a brighter note, the ENT vacuumed all the mud out of his ears and popped the new tubes in, and Dax then passed his ABR. Perfect hearing :) That's my boy!

Right around that same time, Dax starting going to outpatient Speech and PT at a local therapy center. We've been really happy with the new ideas and suggestions they have for us, and we look forward to starting OT at that same center soon. Five therapy sessions a week will keep us fairly busy, but we're already seeing so many improvements!

We're still seeing a vision therapist once a month, and she has great ideas for getting Dax to maximize his functional vision. (I still think ALL men need a vision therapist :P "Where's my socks? I've looked everywhere!")

We also started both the boys in a blended early intervention preschool. It's only two days a week, and the boys both seem to be doing really well with it. Dax will only be able to stay there until he turns three, but luckily we have several more months before we have to cross over that particular bridge.

Other than those major areas, Dax has had several recent and uneventful doctors' appointments... We followed up with the ENT, who said the ears looked great post-surgery. He and I did talk about Dax's paralyzed vocal chord a bit, and we're going to continue giving Dax a few years to give his body time to try to compensate, but once he's more medically stable there is a surgery the doctor can perform that will bring the paralyzed vocal chord over a bit so Dax will be able to talk louder and swallow better... But for now we wait and see.

We had our regular visit with cardiology and Dax's echocardiogram looked great; the pulmonary hypertension is still well-controlled and his ASDs (holes in his heart) are continuing to grow smaller in size. So, do we have another heart surgery in store for us next year to close it? We wait and see. In the meantime, we stay on the same Viagra dose until he outgrows it and see if he can continue to keep the pulmonary hypertension at bay.

We also had our regular visit with pulmonology, today, actually, and they're still happy with where Dax is. We had to turn up his overnight oxygen following his recent surgery and subsequent crappy lung episode, but we've now weaned back down to where we were previously and will continue to try to wean him slowly over time. Seems to be that slow and steady is everyone's approach when it comes to Dax, and I guess that is how it should be.

And, I'd much rather hear "no change" than "we'll try this new med now" or "it seems to be getting worse." Oh, yes, we'll take all the "no change" we can get!

And I guess that's all the technical stuff.

As for the regular developmental stuff, this is where we are:

Mobility:
Dax is taking 9-10 steps at a time. He doesn't do it all the time, and they're not always very pretty, but they're beautiful to us :)

Ty is cruising away, and bridging the gap between two pieces of furniture. He'll let go very, very briefly at times, but that's rare. He can hold my hand and walk with me now, and he crawls all over the place and up and down the stairs. Absolutely amazing to me, how he does all this without any formal teaching :)

Speech:
Dax is really making some progress with his signs, more so than he is with speaking right now. As far as spoken words, he does say a few inconsistently, but we have a consistent, functional use of the signs "up," "Mama," "Dada," "play," "eat," more," "drink," "I want," and "bye," and an inconsistent, but occasional use of "love" and "all done." I have seen him actually sign "More I want eat" which is a pretty decent accomplishment for him, and tonight while we were eating I asked him what he wanted, and he signed "More love." :P Yeah, because that kid is seriously underloved!

TyTy can also sign "more" and "eat" but only when he is competing for what his big brother is eating :) Ty has several babble words in his repertoire, but my favorite new word of his, and the one he repeats most frequently now, is "deux."

Yes, "Deux." Not "do" or "dew," "deux." How do we know? Because it is said with a perfect French accent. We haven't yet figured out if it translates into some random "d" word, if it's actually meant to be translated into "two," or if it has something to do with poop. We'll keep you posted on that one.

Eating:
Dax is branching out a lot and eating a whole variety of new foods. Among his favorites? Green veggies, especially broccoli and spinach, and today's winner: green tomato casserole with fresh green tomatoes from his grandpa's garden. Among the things he will not touch? Fresh fruits. Goooo figure. We're still using the g-tube for the bulk of his calories and to keep him hydrated. Still no thin liquids by mouth.

Ty... Well... Ty has yet to meet a food he doesn't love. And that includes bugs, chalk, and lemons. Escpecially if they're covered in ketchup! And we FINALLY convinced him that sippy cups are not so bad, and he now only gets an actual bottle every other day or so, and the rest of the time it's sippy cups only.

And I guess that brings me to weights and measurements...
Dax is sitting steady at 24 lbs, and he measured 32" tall today.
Ty... I'm not honestly sure how tall he is, because we haven't had his one-year checkup yet, but as far as weight, it looks like he's about 25 lbs give or take a poopy diaper.

Which reminds me... Ty will be ONE this month. How did that happen?!

Seriously!

And I suppose that's most of the high points.

It was really nice to get to travel to MS to visit family over my recent days off. It's fantastic to finally be able to get out and take a fun trip that isn't rushed, especially now that Ty is getting older and can ride in the car for a bit without screaming. the. entire. time. It was fun to see the family and parade my handsome little men along with their cousins through my hometown's 4th of July parade (which I refer to as "The Parade of Grandchildren.") Mom's been wanting us to bring the kids down for that since I was pregnant with the twins in 2007, and I'm glad I was finally able to get them down there for it. Fun times! Hopefully over the upcoming months we'll be able to get out and do some more visiting before we end up in cold, flu, and RSV season again. (It'll be here before we know it!)

And here's a couple of pictures of my little guys, purely for your viewing pleasure :)

Dax, drunk as a skunk before his surgery.

TyTy's favorite lunch: Ma Mills' homemade cookies!

Petting Uncle Jon's "donkeys." (Don't tell him they're horses; he loves making donkey noises!)

Seriously, blocks are his FAVORITE toys now!

Sleepy TyTy

TyTy hanging with his Great Grandma Mills

Night, all!

2010-07-05T14:16:00.001-05:00

Good books are hard to find...

Calling all rocket scientists...

2010-06-28T17:06:00.001-05:00

Anyone smart enough to tell me what this picture is? How am I supposed to teach my kids to label the objects on building blocks if I'm too dense to figure it out???

Are you kidding me?

2010-06-25T22:22:00.003-05:00

Fox ran a news article today that was passed on to me from a couple of other micropreemie moms...

This news article reports that a government-commissioned study in the UK has found that the human fetus cannot feel pain prior to 24 weeks gestation. This finding supports England's current laws allowing women to legally abort a pregnancy at 24 weeks gestation.

The article goes on to say that "The doctors say there is increasing evidence that even after 24 weeks, the fetus is in a state of 'continuous sleep-like unconsciousness or sedation.'"

You can click here to read the article.

I can't say for certain what either of my micros felt during those first hours and days. I don't remember looking at Daxton and ever getting the feeling that he was happy, or content, or unconscious, or sedate (other than the sedation given by the doctors.)

But here's what I do know. At 23 weeks and 5 days, when the nurses pricked Dax, he flinched. When it was too loud, he became agitated. When we messed with him, he reacted physiologically.

And at 22 weeks 0 days, when our Aubrie was in her last minutes of life, and Shep sat at her bedside and watched her suffer, they laid a phone in her isolette and let me talk to her. The doctor reported that when she heard my voice Aubrie's heart rate and oxygen saturations improved. If a 22-week "fetus" can feel comfort, she can also feel pain.

Whatever heartless doctors found the results from above have obviously never sat vigil at the bedside of a "fetus" that was their own baby, or even anyone else's. Anyone who's spent an hour with a baby under 24 weeks knows it's uncomfortable and agitated and overstimulated.

So, Royal College of Obstetricians and Gynecologists, you can go take a long walk off a long pier, because, as my friend Betty said, you're completely full of meconium.

Fathers are from Mars

2010-06-20T11:59:00.003-05:00

Well, it's Father's Day, and I have been trying for weeks to decide what it is I want to write about, but there's just been so much in my head lately and I've had a hard time nailing down exactly what I want to say. The thing is, I love my own dad (formerly known as "Diddy," although that has now been replaced by "Day-Day" or "Papa Scrooge," depending on which grandchild you ask) and I'm so proud of Shep for being the man that he is, and doing the things that he does... But there's just something else nagging at the back of my brain that I cannot shake...

And it's their faults. It's where they struggle. It's what irritates me...

No, this isn't man-bashing, I swear. (I do that every other day of the year.) This is about recognition and acceptance.

I grew up idolizing my father. Yes, he was a huge embarrassment to me through many of my teenage years, but he was always, ALWAYS, there, and he was always gentle, kind, and patient. When I think of him, I think of how he always treats everyone the same and never meets a stranger... I think of his hearty laugh; and his tacky one-liners and groan-inducing jokes. The man has a funny story about EVERYTHING and has a gift of finding humor in any situation.

He's always called me Jane (since apparently when my mother asked him what he wanted to name me because "his input was very important," he said "Jane" and she said "no") and he tells me several times a year that Mom used to always ask him when he was ready for children, and his reply was, and still is, "I'm not ready for children."

No matter what, I've always been Daddy's little girl, and he's always loved me unconditionally.

Even when I told his company from out of town that our bulldog "licks his balls a lot."
It was true, I saw it. And Boozer was not the least embarrassed about his self-grooming, so I didn't see why anyone else should be.

Even when I announced to a restaurant that "MY DADDY WEARS BIG UNDERWEAR!"
Also true, I helped Mom fold them, and I thought that made excellent dinner conversation.

Even when I complained to my Granddaddy that "My daddy beats me."
False, I just wanted cookies. Granddaddy complied.

Up until I was about 18 or so, even though I found my dad completely annoying and a little scary sometimes, I knew, just knew, he was perfect. I wanted to be him when I grew up, and maybe even marry a man just like him.

But then I became an adult, too. And then it hit me... My daddy wasn't perfect after all.

Ouch.

He had faults, and weaknesses, and flaws... Just like everyone else. I wasn't prepared for that. I thought fathers were supposed to be the infallible, unflappable heads of the family; the ones who always made the right decisions, kept everyone safe, did the right thing, and knew all the answers.

And all of a sudden maybe I didn't want to marry someone just like him. I wanted to marry a "perfect" man.

(Please, hold the laughter.)

When I did get married, I was under no delusions that Shep was perfect. I did, however, see him as a man with many, many wonderful qualities, and just a few areas I thought I could improve upon. You know, he had "perfect" potential.

Turns out I'm not so good at teaching old dogs new tricks.

He's impatient. He's egocentric. He has a bad temper. He's a spender. He's completely unable to find anything, ever, even if I tell him exactly where it is. And I could be smack-dab in the middle of a stomach flu, bent over the toilet puking my guts out, and he could still be like, "Hey baby, you look so sexy like that. Do you mind if I..." (Sorry, Dad, if you're reading this...)

And then, as a father himself, he's had a hard time dealing with the crying and the pooping and the whining and the puking... And the machines and the alarms and the appointments and the medicines...

He's said more than once, "Why don't they just TALK?! I'll deal with them when they can TALK!!"

And, I'll admit, there have been times that I've sat and pouted, drowning myself in just how imperfect he is.

But here's the thing.

He, like my own dad, is always, ALWAYS, there. He would lay down his life and everything he is and has to protect his family. He always tries, and always puts his family first. He loves his family with every ounce of everything he's got, and he's so proud of the little miniature versions of himself that have turned his world completely upside down.

And he tolerates ME.

Besides, if I'm honest with myself, I can admit that maybe I'm not that perfect, either.

Maybe I'm a product of two imperfect (sorry, Mom) adults, who loved each other enough to pull together through the crap life threw at them and raise their children the best they knew how. Maybe I am now my own parents, for better or for worse, and maybe Shep is also the product of two imperfect adults who also loved each other enough to pull together through the crap life threw at them and raise their children the best they knew how, too.

And maybe, if you look closely enough, there's beauty in the imperfections.

Maybe it's God's intent for each generation to become the upgraded version of their own parents... (Fail as we might.) To be all the good things our parents are, and, by a beautiful example of reincarnation, try to improve upon the flaws by just a little. Maybe our own children become our only real chance at redemption here on Earth.

And maybe, when we see our children's flaws, we're just looking at our own mistakes not yet improved.

And maybe, when I see the flaws of the men in my life, they aren't just flaws. Maybe, just maybe, they're just what I need to make myself into a better person.

I'm very thankful to have honorable, honest, good men in my life. Without these imperfect, frustrating men, my life would be empty and... different.

But my life is full, and good.

And I will take my own flaws and try every day to improve them, and I will try not to beat my children when they act just like me.

I AM my father, and Shep IS his father. My children are me, and are them. We are all every mistake and every achievement, every blessing and every curse of our parents and their parents before them.

And, once you get past the obvious, that can be a really good thing.

I think once we let go of our preconceived notions of perfection, maybe then we can recognize and appreciate the beauty hidden behind those imperfections.

Because, you know, as fathers go, I couldn't imagine any more perfect than the two I love the most... warts and all.

The best $1.07 I've ever spent...

2010-06-18T08:38:00.001-05:00

So everyone knows the living room as known as 'Six Flags Over the Sheppards,' but I have to admit that, with all the carnival rides, this dollar store beach ball hanging on a string from the ceiling is quite possibly the best $1.07 I've ever spent. Hanging at just above Dax's head level, he now stands, walks and otherwise stalks this ball as if hitting it across the room will bring about world peace. Just thought I'd share.

So all the action's at the beginning and then Dax starts acting like... Dax :D

2010-06-12T18:49:00.001-05:00

I'm a bad blogger

2010-06-08T23:21:00.005-05:00

I've been busy.

Some of it has been super important!

Some of it has been pretty useless.

Some of it has been wonderful and amazing!!!

Some of it has been bags of crap covered in more crap. With a side of crap. And little crap sprinkles.

So goes life!

Just wanted to hit a few highlights from the last bit...

The boys are great! Dax is pretty consistent with signing "more," "eat," "I want," and a long, complicated series of nonsense signs that Nana loosely translates as "Steal 2nd base."

His current favorite spoken words are "bok bok," "quack," "duck," and "bite."

Biting is also one of his favorite activities.

(Getting bitten is one of Ty's least favorite activities.)

Dax will now do all of "Patty Cake" including "rolling 'em over" and then "shooting them in the pan," although apparently the pan is his face. We haven't figured that part out yet, but oh well.

He also likes to do "Itsy Bitsy Spider," which is, to the untrained eye (and also the trained eye), exactly like "Patty Cake," "If You're Happy and You know It," the regular clapping of his hands, and "more."

He's eating a huge variety of foods now, although we still have to cut them into small pieces for him since he refuses to chew. Still putting all the think liquids through his tube.

We had a super-scary incident at the end of April when I really thought we'd land back in the hospital, but thankfully we were able to avoid it. His lungs were so wet, he was retracting, he had his first fever since he was six months old, and his breathing sounded like he'd been running uphill. I am so completely thankful for lots of praying friends and family, a wonderful home health nurse, and the best pediatrician and pediatric nurse I could ever hope for. We're so blessed to be surrounded by so many caring people!

Oh, and Dax is in a toddler bed now, and he does amazingly well with it! He was so proud of himself his 1st night... I have never, ever seen him that excited. It was one of the most heart-warming, most precious nights of my life, even if the thought of him being a big boy now nearly broke my heart into a thousand pieces.

Moving on to the little chubbo-tubbo now :)

Ty is 10 months old now, and he pretty much exclusively wears 18-month clothes. He's big and tall and handsome and smart and... okay... pretty whiny, but it's a cute whiny.

(Most of the time.)

(Or maybe just some of the time.)

(Ok, so maybe it's not that cute.)

Ty spends most of his day trying to be right next to his big brother, doing everything his big brother does.

Ty hates wearing clothes. Ever. Huge fit every time... The only way he'll get dressed and not be upset is if we... wait for it... allow him to have a pretend breathing treatment afterward.

As I said, he wants to be juuuust like brother.

Ty plays "Patty Cake" with Dax and loves, loves, loves to clap his hands all the time :) That, I suppose, he gets from his mother :)

Ty also waves "bye bye" with a finesse that most babies could only dream of!

Ty is cruising everywhere and just barely lets go for a short, short time. He'll walk holding our fingers and can climb the stairs with someone right behind him.

Oh, and then there were the two times he climbed the stairs when we weren't paying attention. (Don't do it; I've already nominated myself for Mother of the Year for that one!)

Ty has 3 and a half teeth now!!! I say half, since there's one on the bottom that cannot make its mind up. Hopefully it will emerge soon, to stay, otherwise we might be throwing one loud baby out with the bathwater!

Ty's favorite words are "DaDa," "TyTy," "Dax," "MaMa," "dog," and "WAAAAAHHHHH!"

His favorite activities are eating, bouncing, eating, hugging, eating, and whining.

I guess he's just going to be my sensitive one... and he has the sweetest hugs and kisses ever, which totally makes up for the Irritable Boy Syndrome.

He, in addition to the biggest heart and biggest smile I've ever seen, continues to have the biggest butt ever found on a white boy. Beyonce, you better watch out. My baby got back!

Ty and his big brother share a room now, and each morning they talk about their dreams, favorite TV characters, and plans for the day, in some strange language I can best describe as Swahili with a touch of kitten. It's so very sweet, and so very special.

And I reckon that's the high points!

We have a lot of things going on now, and a lot of things coming up. Dax is getting his tubes replaced in addition to an ABR hearing test on Friday, and those procedures will be the first time he has had to be sedated in over a year. Please say a prayer for him to tolerate the anesthesia well and have an uneventful surgery!

Please also continue to pray for Baby Teegan to stay put, and for Rosemary to get her trach out next month. Please also add Baby Salem and his parents, as Salem may have an undiagnosed genetic disorder, Baby Chase and his hope-to-be-adopted family, and Braden and his family, as they fight to make sure Braden can get all the therapy and treatment he needs while trying to fix a really crappy situation, to your prayer lists, too. There's a lot of need and a lot of sadness in this world, but there's also so much good, and so much to be thankful for!

Coupla more requests...

2010-06-02T08:50:00.004-05:00

Couple of prayer requests, folks...

1. My friend Daphne's house was struck by lightening yesterday and her family has lost all their physical things. She's amazing, and they'll be fine, but just please pray for their strength and comfort. Please pray especially for their sons, Blake and Bryce, that they are comforted with all these things they might not yet fully understand.

2. Hopefully (!!!) Baby Rosemary will finally get her trach out tomorrow! It's been one thing after the next after the next after the next standing in their way, but pray that tomorrow it finally happens and Rosi can finally work on the next phase of her life!

3. Please pray for my friend Dana. We met in the NICU and she is pregnant again with a baby girl names Teegan. Teegan keeps trying to make a grand entrance, but it would be in everyone's best interest if she would stay put in her mom's uterus for, say, about 5 more months. Dana has had a cerclage and is on meds and bedrest to halt the labor... Please pray Dana's body cooperates and Teegan stays put.

Thanks guys!

Pray for Carter

2010-05-29T21:32:00.002-05:00

A friend just shared this blog with me and I wanted to pass it on. There is an amazing little boy named Carter who will most likely be going to heaven tomorrow. Please read their story and pray for this tough little guy and his family. Their faith and attitude should serve as inspiration to us all.

Skinny dippin'

2010-05-22T17:24:00.001-05:00

A little bit of catch-up

2010-05-01T20:01:00.007-05:00

So, it's been a super-long time since I've done a kiddo update, and as I am currently sitting in my room having some quiet time and reminding myself that I do, in fact, adore my children, despite their current incessant whining and orneriness... if orneriness is even a word.

I think I'll do bullets today... I'm feeling lazy. I blame it on the rain.

We'll start with Dax :)

23lbs 2oz and 32" tall at his last doctor's appointment!
He's TWO now!
Pulmonology has us weaning off of his O2 at night. We're allowing his O2 sats to drop to the low 90s since that's actually good for the holes in his heart, and it doesn't appear to be causing any problems with his pulmonary hypertension. Yay! So he still wears the O2 at night, it's just turned down to a ridiculously low little half-puff of a tad bit of an eensy amount of extra air. :)
We have surgery scheduled in June to replace his tubes in his ears since one has worked its way out, and that ear has already accumulated fluid again. I called all our specialists to see if anyone wanted to piggyback any procedures since Dax would already be sedated and intubated and... they all said NO. Wow.
Still allowing Dax to outgrow his dosage of Viagra... He's just a slow grower and it's taking a while.
We've been trialing out bolus feeds instead of continuous feeds with the g-tube, and Dax's appetite has really picked up during the day. We're trying to increase his fluid and caloric intake and are still trying to figure out the how much-es and whens.
Our most recent swallow study showed he is still aspirating on thins, so we'll keep on thickening his liquids. His most recent laryngoscopy showed his left vocal chord is still paralyzed, and will therefore likely remain that way, and that is probably a huge contributor to his inability to handle thins. Hopefully he'll learn to compensate over the next few years.
We've actually started trying some intro to potty training to build tee-tee and poop awareness, since Dax has pretty much no awareness of discomfort at all. We've been having Dax sit on his potty after his bolus feeds and flushes when we know he'll have to go, and then making a big fuss about his success. I will go into details about that in a different post, which will include fun details like how he feels the need to pull his wiener out and point it at things while he's sitting on his potty and how he thinks putting toys and food in the potty while he is sitting on it is a fantastic idea.
Since we're starting the potty, I picked up some big boy underwear the other day. Turns out they were a fantastic purchase! In addition to them making Dax look like a miniature Calvin Klein model, he can wear them over his diapers to make a nice place to tuck in g-tube extension tubing when we leave it attached between bolus feeds and flushes. I love it when a plan comes together!
Still not walking, but he's up to 5 or 6 steps at a time and is standing for longer periods without holding on to things. His PT has ordered a reverse gait trainer assistive device for him, but stated, for the record, that she "knows he will start walking the day it comes in." That's my boy :)
We're about to start on a new journey, and it's pretty scary for me but I think/hope it will be the best thing to do for Dax in the long run. Since we're out of RSV season now, we're about to start outpatient PT, OT, Speech, and swallow therapies. He's only been getting PT for months now, since there are just no pediatric ST or OT home health therapists in this area. During the winter I felt the benefits of outpatient were outweighed by the risks, but I want to really push him now, at least until next RSV season, and I'm hoping the increased therapies will help.
In addition, we also have Dax and TyTy both on the list for a blended early intervention preschool. Again, we're out of RSV season and Dax needs the socialization, as does Ty, but it's pretty terrifying for me. Luckily, I know the ladies who work at this preschool and they're amazing, and I know both my kiddos will be in good hands. I think my biggest fear is Dax getting into a peer's juice and aspirating in addition to my usual fears of germs... But I know him being around other kids is important now, too... So I'm letting him go, and I know it's what's best... And everything will be okay. Right... Right?!
We did the March for Babies a few weeks ago and ran into several of our old friends and met some special moms I had been wanting to meet forever. Our team raised over $1800 :) I hear it was the biggest March for Babies ever in the state of Tennessee... I'm so glad we were a part of it, and so thankful for everyone who marched for Dax, Aubrie, and Kins!

Dax

NICU

sats

Lasix

And now on to TyTy:

Dax's "little" brother also weighs in at 23 lbs.
Ty, who once wore his brother's hand-me-downs, is now re-hand-me-down-ing the clothes back to his brother.
He's now got his 2 bottom teeth, and if I don't kill him first, he should be cutting in 2 more bottom teeth any day now. I think he'll look a lot like Lola the bulldog with his 4 bottom teeth and no top teeth.
He's decided that his "big" brother is the coolest person on the face of the Earth, and as long as he can see Dax and do what he's doing, life is good.
Oh, unless Dax is playing drums on his head. Still not a big fan of that.
TyTy is crawling everywhere and pulling up on everything. He has not yet mastered the art of sitting down once he's pulled up, though, so about 3-5 minutes after he stands he cries until you sit him back down. Hopefully he will soon learn how to plop down on that big fat hiney of his.
He turned 9 months old yesterday, and wears pretty much exclusively 18-month clothes now. We're currently searching for "Richard Simmon's Sweating to the Nursery Rhymes."
He's saying "Dada," "Mama,", "Nana," "dog," and "Ty" pretty much whenever he wants to, and pretty much never when I want him to.
He's working on tee-tee awareness along with his brother, since Tag-a-long TyTy was determined to be right by Dax during potty time, anyway. Oddly enough, Ty usually tee-tee's faster than his brother once he's on the potty, and is the first of the two to poop in the potty. Although, I guess that's not too awfully odd, since Ty poops, on average, about 42 times a day, while Dax's plumbing runs considerably slower....
Ty loves Oreos. Actually, "Oreo addict" might be a more appropriate term. He would snort, inhale, and inject them if he knew how. Must be genetics; maybe he can go to Oreoholics Anonymous meetings with his Ma Mills.

I think that's the highlights for now, and duty is calling, so I best be off... I'll upload a few more pictures soon!

Love you guys, hope you're doing well, and I'm glad to be back!

Quite possibly the best picture ever made.

2010-04-27T20:24:00.001-05:00

Potty animals

Asking for prayers....

2010-04-24T23:08:00.002-05:00

Hi all,

I'm asking you all tonight to pray for all the people affected by the tornadoes that destroyed many areas in the southern states today, including two communities in my native Choctaw County, Mississippi. As of now, I know of several friends from my childhood who have lost their homes and loved ones... And there will still be more to come.

I just heard about an hour ago that a girl I went to high school lost her 3-month-old daughter in the storm, and the mother is currently in the hospital for her own injuries. When I went to her Facebook page to send condolences, I cried when I saw she had just uploaded pictures of her daughter this morning.

She had no way of knowing...

Life is too short. Don't take anything for granted.

Things that make you say 'Hmmmm...'

2010-04-24T20:30:00.001-05:00

I hope this is an indication of a future interest in plumbing and not just a preview of what he'll be doing in college...

The "R" word

2010-04-20T22:21:00.004-05:00

So there's been this blog post a'brewing the last few months... I'm anticipating this won't be everyone's favorite blog post ever, and it might piss off a few people... And that is not in any way my intention...

...but the opinions expressed in this blog are mine and mine alone and do not in any way reflect the values or attitudes of anyone else anywhere, anyhow, and if they do, well then I could be friends with that person, but you don't have to like either one of us and so on and so forth...

Moving on.

Let's start with some back story:

I was probably 19 or 20, back when I knew everything. It was Day One of Racial and Ethnic Minorities class, and all the black kids were sitting on one side of the class and all the white kids were on the other side, and the professor walks in wearing a denim vest and cowboy boots... She welcomes us to class and says "Today we're going to talk about stereotypes. You guys tell me some stereotypes about black people."

(Crickets chirping)

(Chirp chirp chirp)

(Stupid crickets)

Finally the professor says, "Come on now, we all know some! You know, pink house with purple shutters! Watermelon, collard greens, and fried chicken! Government cheese! Come on, you can do it!'

A few of the black students laughed... We white kids were petrified. Oh my god, what was she doing?!

A couple of the black students volunteered... "We all have four or five babies by different baby daddies," and "We all are in college on basketball scholarships..."

A few more folks chimed in... Then the professor asked about white people.

What? There are stereotypes about white people?

"They all sit at home watching Wheel of Fortune every night!" What? I love Wheel of Fortune.

"They can't dance!" Umm, guilty.

"They can't jump!" I, umm, yeah, can't argue with that either.

"They all drive around in the mud drinking beer and shooting at things!" Phew, maybe I'm not a card-carrying stereotypical white person after all... Although I have actually been a passenger of a mud-covered truck being driven by someone who was drinking beer and shooting at things... But that's not that important.

"They lock their car doors when they drive through my neighborhood." Honestly, yes I have.

"Okay," the professor said, "What about Asians?"

"They can't drive!"

"They're good at math!"

"Their vaginas are slanted!" (Don't shoot me, I'm just the messenger.)

We were all shouting answers out. Stereotypes are FUN :)

"What about Jews?"

(The crickets returned... We were smack dab in the middle of Bible Belt, Mississippi. None of us actually knew any Jewish people.)

"What about gays and lesbians?"

"Birkenstocks!"

"AIDS"

"Rainbows!"

"Flannel!"

"They're faaaaaaabulous!"

I hope you see my point by now :)

By opening that door for us to all be able to talk about our stereotypical views of people different from us, all of a sudden nothing was off limits. We spent the rest of the semester educating each other in an open, friendly, fun environment.

What's my point, you ask? Quit rushing me. I'm getting there. You might as well get comfortable, because this is going to be one long, drawn-out blog post.

What I learned in that class had very little to do with any other cultures or religions... What I learned is that we have stereotypes about everything, and that is normal. When we are introduced to a new concept or idea, and we mentally sort that unknown into an area and make positive and negative assumptions based on our history. That's a normal part of learning, like a child calling a dog "cat" because it has four legs, or an adult calling a dolphin a fish, even though it's a mammal, or a person "Mr." even though he's a "Dr."

We do that because the new item is novel and we put it on the shelf we think it fits best.

But here's the problem, and one of the points of this drawn out post...

If I call a dolphin a fish, it's because I don't know much about dolphins (or porpoises. I could actually be picturing a porpoise in my head right now instead of a dolphin. I can never tell them apart.) It has nothing to do with the character of the fish, err, mammal, or it's abilities to swim or breathe or do whatever else it is dolphins do. It doesn't make the dolphin any less beautiful, or any less graceful. It proves only that I am dreadfully ignorant when it comes to dolphins.

But let me bring this back around to what I am really trying to say...

My point is... We're ignorant about new things until we are exposed to them, and then we do the best we can with what we know...

My mom reminded me today about something my little brother Oops said when he was a little bitty thing... A very old black woman whom he saw almost every day passed away, and my mom and dad did their best to explain death to him. Fast forward until he had time to process it a while, and he asks my mother "Hey mom, when I get old and turn black, will I die, too?"

Yes, it's pretty funny, but its a great illustration of how we think and how we make incorrect inferences.

Segue to "the 'R' word." (Not a very smooth transition.)

I have spent my entire adult life working with people who are "different." Mental illness, mental retardation, developmental delays, brain injury, genetic syndromes... So I came into motherhood with a knowledge of "different" that is broader than your average mother's. When Daxton was born we knew he would probably never be completely "normal," and I cried buckets of tears over it. All of a sudden the word "retarded" was a much bigger, meaner word. People shouldn't say that word; it's a terrible word. How can people use it so loosely and callously to poke fun at others?

But wait.

I had spent my entire life wishing people were more open about their differences. I love comedians who can stand on a stage and make jokes about EVERYONE, regardless of their race, age, creed, or color. Laughter can unite us all, right? And I'm from a family that, if you walk around listening at any family gathering, constantly makes fun of its members for being too short, too tall, too fat, too thin, too smart, too dumb, too drunk, or too wild. There's never any hard feelings because, well, we are made up of people who are short, tall, fat, thin, smart, dumb, drunk, and/or wild.

And getting offended over the truth is a little silly.

But then I hear about comedian Sarah Silverman telling an absolutely horrific joke at a function, a joke making fun of developmentally delayed kids and terminally ill kids... And when I heard the joke I thought Sarah Silverman was the coldest, cruelest, most awful person alive.

But wait.

If I do some soul searching, I think I might have laughed at that joke 15 years ago. Maybe even 10 years ago. Definitely not now...

But if the joke had been about bad Asian drivers or exploding Muslim extremists, would I find it funny now?

I mean, not long ago my favorite joke was about AIDS and dementia. That joke is hilarious... Although probably not to someone who has AIDS and/or dementia, or to someone who loves someone with AIDS, dementia, or some combination thereof...

Come to think of it, I guess AIDS and dementia are probably not typically super-hilarious medical issues... Not like erectile dysfunction and schizophrenia, which make the best jokes...

Unless you have erectile dysfunction or schizophrenia...

Hmmm.

So I made myself think long and hard about my feelings about "The 'R' word," and I've made myself do some reshelving...

...And here's what I got...

My son is developmentally delayed, and will probably grow into a diagnosis of mental retardation when he turns five. I can sugar coat that any way I want to, but it doesn't change it.

Here's the thing, though... I will not allow Daxton to be defined by his diagnoses. He will have to define himself.

I remember the night we were told he had cerebellar hypoplasia and would have global cognitive delays and probably never walk, etc... One of our primary NICU nurses told me "He's still the same kid." That may not sound super profound, but it is. No matter what labels he is given, or what shelf people put him on, he is still the same kid.

And that kid is awesome.

But you know what's more important than anything else? No matter how awesome I think he is, he's going to have to know that for himself. He is going to have to be able to embrace his differences and be comfortable in his own mentally retarded skin. Why? Because he WILL be made fun of. He WILL be ostracized. He WILL be looked at as different... He WILL be stereotyped...

But you know what? That's a normal part of life, whether you're in a special education class or on the football field. Like it or lump it, Dax has to be able to go out and show the world which shelf he goes on... And unless I want him to go on a "To be pitied" shelf, or on a "To avoid" shelf, he needs to be able to accept himself, laugh at himself, and show others why he is so special. He needs to know that being called a "retard" does not change who he is, and that being "different" is not bad.

Have you ever seen Josh Blue do his stand-up routine? Click here to watch a clip, then tell me what you think about him. Would you put him on the "Poor guy has cerebral palsy" shelf, or on the "This guy is awesome" shelf?

He has CP. He knows he has CP. He's not offended by his CP, or by others pointing out that he has CP. It's a part of him... But it does not define him.

I was sitting at a facility for mentally retarded adults a few weeks ago and overheard the best conversation ever... It was between a blind guy and a lady with Down Syndrome...

The lady says, "Hey, you're blind."

"Yep," says the guy.

"I'm not," says the lady.

"I can see that," says the blind guy...

And we all cracked up. Together.

That highlights something I think would make this world a much better place... We spend so much time trying to hide our flaws and our differences... Why? Why are we not allowed to talk about them? Why is it rude when a child points at a person at the grocery store and says "Look, Mom, that guy is fat," or "That lady is really old"?

I mean, if the guy is really fat, and the lady is really old, why is that offensive?

Mom also reminded me today of the time many, many years ago when she was pushing Oops in the grocery cart and they passed a man with no legs in a wheelchair. She moved on by pretty quickly, not knowing what Oops was about to say, but knowing something was coming and it wasn't going to be pretty...

"Mom," he says, "Where does he put his shoes?"

Couldn't that have been a great teaching opportunity? After my mom stopped laughing?

I really wish we all wore shirts or buttons everyday that advertise our differences... Maybe a dry erase board around our necks that we can write on each day to tell others what we are most insecure about at that moment... I visualize people walking around with signs that say "I'm lonely" or "I haven't shaved my legs in a month" or "I have gas today" or "I didn't have any clean underwear this morning so I'm not wearing any" or "I have a really small wiener, but a really big, fast sports car."

And then, somebody might look at you and say "You have a small wiener!" but you can look at them and say "Yes, but you have hairy legs!" and everyone can go on about their business. Then on down the street, someone might come up and say, "Well, hi, I have a small wiener, too! Would you like to go compare sports cars?"

The truth is, we all have insecurities and fears... And to get back to Daxton and the "R" word, even if he were "normal" he'd still be picked on for something... Because all kids are.

I remember when we were kids... We called each other whatever names we could think of. "Deflicted" was a common one, which I now know we were not smart enough to know the word was actually supposed to be "afflicted," and we frequently broke out the big gun, "dill weed," which I just recently learned is actually available on the spice aisle at your local grocery store. We obviously used whatever words we could find that we thought could get the biggest response, even if we had absolutely no idea what the words meant.

Does that make it okay for kids to pick on each other? Of course not. And I think the campaign to end the use of the "R" word is noble but... As long as there are people on this earth, there will always be ignorance and stupidity. Maybe the overuse of "retard" and "retarded" will someday fade away, but the word will be replaced by some other word that will be equally as hurtful to someone.

And honestly, many people I know who want to do away with the "R" word don't give a second thought to saying "That's so gay" or "That's so ghetto" or "He's probably just another illegal alien" or "She's so bipolar."

But, really, what's the difference? Oh, that's right. The "R" word affects ME. The others do not.

But maybe no one likes to be stereotyped or pigeon-holed.

There are words we say and hear around us daily that may or may not affect us personally....but I can guarantee they hurt someone, somehow... because they are a novel concept to us, and we shelve them the best way we know how... and we remain ignorant.

So what to do? Do we eliminate all potentially hurtful words? Do we each learn all we can about every socioeconomic status and religion and race and ethnicity so we can understand their cultures?

Here's my vote. I vote to learn more about others, and try to never believe a negative stereotype about anyone until I know it firsthand.

I vote to expose my own children to people different from them and allow them to ask questions and learn from each other as equals.

I vote to educate others on the stereotypes surrounding mental retardation, intellectual disabilities, developmental delays, and the like.

And, yes, I vote to continue trying to educate everyone that "retard" is not a polite thing to call others, and that being mentally retarded is not bad or shameful...

But I also vote to teach my children that being "normal" is over-rated...

And I vote that, in this family, we will not find the words "retard" or "retarded" offensive. I vote to not be offended if the words are used in ignorance because, you know what? Thankfully most people are healthy and average and blissfully unaware of what shelf to put us on... And part of me is very thankful for that.

I also vote to not be offended when people use the words intentionally to hurt. I refuse to give them that power... And as Eleanor Roosevelt so eloquently put it, "No one can make you feel inferior without your consent."

And I just don't think any of us have anything to feel inferior about... Actually, I'd call us all pretty damn blessed.

I'm baaaaaaaack

2010-04-18T20:26:00.002-05:00

Okay, so I don't actually mean right now, per se, but FINALLY, after 4 months in computer rehab (thank you procrasting-IT-guy-at-my-company) my laptop is now home safe and sound, and I might actually be able to have time to sit and blog every now and then :)

It's good to be back!

Hopefully, more to come soon... We have LOTS to catch up on!!!

Happy 2nd Birthday Dax!

2010-04-04T14:08:00.001-05:00

We had a little pre-party birthday cake at our house today. I think we can safely say the boys enjoyed it!

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Big Plans

2010-03-23T18:42:00.004-05:00

Big Plans

If God had let us keep you,
We had your whole life all planned out.
You’d have been your daddy’s sweetheart,
And my spitfire, there’s no doubt.

You would give us big wet kisses,
And wear ribbons in your hair.
And we’d blow zerbers on your belly,
And you’d have pink princess underwear.

You’d be a straight-A student
And be friends with everyone.
And the boys would all be so amazed
At how fast our girl could run.

You’d have your slumber parties,
And you’d giggle all night long.
And when your dad taught you to drive,
I’d be scared but tag along.

Then you’d move away for college
And it would be so bittersweet.
And you’d set right out to change the world
And be so strong, but still so sweet.

And then one day you’d meet a man
Who loved your spirit and your heart.
And you’d have a bunch of children,
And they’d have their mother’s spark.

One day you’d bury me and dad,
The way our children should.
And you and your brothers would be sad awhile,
But still know that God is good.

If God had let us keep you,
You’d have been a shining light.
Those who met you would not forget you,
And you’d stand for what is right.

But God didn’t let us keep you…

So when your tiny heart stopped beating
We mourned all you’d never do.
It just took a while to realize…
That despite all our dreams, Tiny Angel…
God had bigger plans for you.

Mollie Sheppard

In loving memory of
Aubrie Angelina Sheppard
3/23/08-3/24/08

Happy Birthday Sissy!

2010-03-23T17:02:00.001-05:00

Happy Birthday Sissy!

2010-03-23T16:47:00.001-05:00

Breaking news: TyTy has a

2010-03-14T11:13:00.001-05:00

Breaking news: TyTy has a toofie, TyTy has a toofie! And it's WHITE!

March for Babies

2010-03-05T18:07:00.001-06:00

Click here to help me reach my goal!

*SCATTERED*

Why their wives will be potty training them

Special needs parenting... Said better than I ever could

What Aubrie's Angels has given me

For Prematurity Awareness Day

Sweet Justice for a Sweet Baby :)

A toast to beat all toasts

Why yes I am pretty much the most awesome mother ever. Thanks for noticing.

I actually posted videos. Please hold your applause until the end!

Guess what?!?

And the award for best blog follower goes to...

iRoadkill

Big Brother, and Mother, are watching

Sweet Baby's day in court! *UPDATE*

Not a Father's Day post, but Happy Father's Day anyway

Hold on to your breetches, it's an update!

Prayers needed for a micro-preemie friend!

Happy Mama's Day!

Happy Birthday to Daximus Maximus!

Happy 3rd birthday to our angel!

'Twas the Night After Discharge

Adventures in potty training... Take 11

Sometimes God is an Indian giver

Oh my, it's a blog post!

Just showing off a little...

Didja miss us?

Aubrie's Angels... What we're doing.

Aubrie's Angels gift collection: Day 14

Aubrie's Angels gift collection: Day 13

It's not too late!

Aubrie's Angels gift collection: Day 12!!!

Aubrie's Angles gift collection: Day 11

Aubrie's Angels gift collection: days 9&10.

Aubrie's Angels gift collection: Day 8

Aubrie's Angels gift collection: Day 7

Aubrie's Angels gift collection: Day 6

Aubrie's Angel's gift collection: Day 5

Aubrie's Angels gift collection: Day 4

Aubrie's Angels gift collection: Day 3

Aubrie's Angels gift collection: Day 2

Aubrie's Angels

Can you believe it?

Mental diarrhea of a special needs mom

So there's some good news and some bad news

Random Facts

More prayer requests...

Needing prayers...

I didn't see this one coming

Dax tricks, in case you forgot how cute he is ;)

A tiny little update on a tiny little Sweet Baby

Time for a roll-call

Because my friend Kathy hadn't seen me cry lately...

Holy crap, an update!

Best. Picture. Ever!

Floppin' free after 3

Baby Bella

A better life for Sweet Baby **UPDATE**

A tale of two ERs

One of my favorite poems...

You Are Not Typical

A little friendly competition between brothers...

It never gets old...

My birthday present :)

Random Fact

My Wal-Mart Epiphany

Wasted paper...

TyTy's First Birthday!!!

Letter I will be sending to Vanderbilt

Going home today!

Out of my hands.

Birth story numero tres: The Demon

Unbelievable

A ghost story

My "once-weekly-but-now-I'm-lucky-if-I-write-it-monthly" update

Calling all rocket scientists...

Are you kidding me?

Fathers are from Mars

The best $1.07 I've ever spent...

So all the action's at the beginning and then Dax starts acting like... Dax :D

I'm a bad blogger

SCATTERED

Sweet Baby's day in court! UPDATE

A better life for Sweet Baby UPDATE