Monday, December 27, 2010

Didja miss us?

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!

Thursday, December 16, 2010

Aubrie's Angels gift collection: Day 14

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

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.

Tuesday, December 14, 2010

It's not too late!

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!!!

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!

Monday, December 13, 2010

Sunday, December 12, 2010

Friday, December 10, 2010

Aubrie's Angels gift collection: Day 8

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

Thursday, December 9, 2010

Aubrie's Angels gift collection: Day 7

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

Friday, December 3, 2010

Aubrie's Angels

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?

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!

Friday, November 26, 2010

Mental diarrhea of a special needs mom

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.

Tuesday, November 16, 2010

So there's some good news and some bad news

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!

Thursday, October 28, 2010

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

Tuesday, October 26, 2010

Random Facts

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!

Friday, October 15, 2010

videoJammin out to a jazz band at Vandy today!

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.

Monday, October 4, 2010

More prayer requests...

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!

Saturday, October 2, 2010

Needing prayers...

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.

Thursday, September 30, 2010

I didn't see this one coming

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.

Tuesday, September 21, 2010

A tiny little update on a tiny little Sweet Baby

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…

Tuesday, September 14, 2010

Time for a roll-call

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!

Friday, September 10, 2010

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

...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.

Thursday, September 9, 2010

Holy crap, an update!

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!

Sunday, August 29, 2010

Floppin' free after 3

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!

Thursday, August 26, 2010

Baby Bella

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!

Wednesday, August 25, 2010

A better life for Sweet Baby **UPDATE**

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!

Sunday, August 22, 2010

A tale of two ERs

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.

Thursday, August 19, 2010

One of my favorite poems...

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

Friday, August 13, 2010

You Are Not Typical

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

Monday, August 9, 2010

A little friendly competition between brothers...

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

video

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

It never gets old...

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

Saturday, August 7, 2010

My birthday present :)

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!

Wednesday, August 4, 2010

Random Fact

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

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.

Tuesday, August 3, 2010

Monday, August 2, 2010

TyTy's First Birthday!!!

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!!!



 

Saturday, July 24, 2010

Letter I will be sending to Vanderbilt

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?

Sunday, July 18, 2010

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

Out of my hands.

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.