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:

help (his personal favorite)
elephant (his very close runner-up favorite)
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!