Wednesday, February 29, 2012

Happy Rare Disease Day!

It's Rare Disease Day, a time for people to recognize the enormity of the responsibilities we special mothers face on a daily basis... A day when others tell us what good mothers we are for taking care of special children and how much God will bless us for all we're going through. A day we all pull together to support each other on this ride we're on...

But there's something I think needs to be said...

I think we're the lucky ones.

If you'd have asked me when I was pregnant four years ago what I wanted, you'd have gotten the standard "as long as it's healthy" reply. You know what? It irritates me when I hear that now... Because I think we're the lucky ones.

If you'd have asked me four years ago what the worst possible outcome of pregnancy would have been, I'd have told you a child who didn't have ten fingers and ten toes; a baby that wasn't "normal." But, you know what? I think we're the lucky ones.

I am immersed each day in a sea of special needs parents and special needs children. We are all very different people with children who are at varying levels of functioning or medical needs. We all have lives that revolve completely around appointments and IEPs and insurance and the ignorance of others and all the other craptastic things that go along with having a child who is not "normal."

But, you know what? I think we're the lucky ones.

When you look at this ragamuffin group of friends I've accumulated and their spazzed-out, occasionally blue, always stimming, rarely verbal, wheelchair-bound, genetically enhanced, or ER-loving children, you don't see a group of mothers who sweat the small stuff. You see a group of mothers who celebrate... You see mothers who see beauty and love and miracles everyday in a way that most people can't. Those lines around their eyes? They've been formed from both tears and laughter.

When I look at the way our lives have been re-prioritized for us, not by our choice, but by the grace of God, I am thankful. I am thankful for a life so full of goodness and blessings that I rarely notice the inconveniences. I am thankful for a life that society would choose to pity unless they got to walk in my shoes just one day, and then they would see just how much more beautiful the view is from here. 

So maybe I have earned a few more gray hairs than some. Maybe I've spent more time crying than most. Maybe I've gotten less sleep than... everyone.

But the juice is definitely worth the squeeze. I love that kid with all of my everything, and I wouldn't trade him or one thing he's been through for 100 of your "normal" kids. 

Because we are most definitely the lucky ones.

Friday, February 24, 2012

Holy crap on a cracker, Batman, it's an update.

Hi, four people who still love me despite my lackadaisical blogging habits... ;)

Well, it appears that I won’t be winning any Blogger of the Year awards any time soon. That's good because there's plenty of room next to the Mother of the Year and Housekeeper of the Year and Employee of the Year awards I won't be getting, either. So it works out.

It’s been forever and a day since I posted an update, but maybe today is the day… with “today” meaning whatever day I actually complete this update. We shall see, senor.

Where, oh where, do I start? My Daximus Maximus will be FOUR in less than two months. FOUR. I am shocked and amazed by this. Where has the time gone? How has he become a little boy, albeit a totally non-potty-trained one, right before my very eyes without me even noticing? How?

At last measurement he was just over 36” tall and between 31 and 32 lbs, depending on the scale. He’s solidly on the bottom quarter of the growth chart now and he’s not looking back. I was actually able to dress him in a 4T outfit a couple of weeks ago and I cried like a baby. 4T. Wow. I can remember looking at 18 month clothing and thinking he would never, ever be that big… And now he can wear 4Ts? What. A. Hoss.

So, as for development, he is currently in two hours of PT a week, four hours of ST a week, one hour of OT a week, and he has a homebound teacher who sees him three hours a week. He’s also still in Tae Kwon Do one hour a week, and let me tell you, he has earned his title of The Unlikely Ninja.

Physically he’s doing great. He runs and jumps and, if you make him, can climb stairs just holding onto the rails. He can finally step on uneven surfaces without falling and go up and down from curbs independently. He can even do the two stairs into the sunken den without holding onto anything when he sets his mind to it. There’s still much work to be done, though. Blame it on the cerebellum or on PVLs, blame it on vision, blame it on the pull of the moon, or blame it on the ah-ah-ah-ah-ah-alcohol, he still has balance issues and has unequal hip flexion, and, although he has finally gotten to where he can stand still without constantly having to step back and forth to keep his balance, he still looks as if the slightest gust of wind could knock him straight on his tiny hiney.

Occupational therapy-wise he seems to be making steady progress. He’s not caught up, but he’s not falling further behind, either. His downfall in OT will be his never-ending ability to find an easier way to do things than is developmentally appropriate, and why on earth do it your way when he can do it his way? I have no problem with him doing things his way, but I feel very strongly he should at least have the ability to do it the way the other kids do, and then he can choose the way he wants to do it. I find it is a perpetually exhausting job trying to stay a step ahead of this child, though.

Speech and language-wise Dax is doing great things! For this to be his biggest deficit area, he is continuously surprising me with the new things he is showing off. He knows so, so much receptively, although his strength is most definitely concrete concepts. His articulation still suuuucks, but everything he says means something once you figure it out. And, yes, I still suck at figuring it out sometimes. If he said “gonorrhea” once the other day, he said it 75 times, and I still don’t know what it means… Unless it actually means gonorrhea, and I hope that’s not the case. I spent hours the other day trying to translate this phrase he kept saying, only to finally, FINALLY figure out he was saying “We found love in a hopeless place.” Oh, of course. Rihanna. How did I not get that? Stupid mama.

He does have the official apraxia label now. This kid has more labels than the Campbell Soup factory.

And then there are those times he is perfectly clear, like this morning when he came and climbed in bed with me, said “good morning,” pulled my shirt up, and then said “boobies.” One small step for speech therapy; one giant leap for mankind.

Dr. Dax, cardiologist at large
Healthwise Dax is doing very, very well. We have weaned him completely off of Viagra now, and he’ll have an echo next week to check his heart function without it. Big, big step for us! If all looks well, they’ll schedule a cardiac cath in the next month or so to measure his pressures and see how much, if any, impact his ASD is having at this point. With each echo he’s had the ASD has gotten smaller and smaller, so it’s looking increasingly promising that he will not need surgery to correct that… Which makes me one very happy mama.

Pulmo-wise, we had weaned him down to one puff of his Flo-Vent twice a day, but a couple of weeks ago he had another 4AM Young Wheezy cameo so the pulmo had us increase it back to two puffs BID. We also finally replaced the Xopenex via nebulizer with a rescue inhaler which is a huge relief for me, since carrying around a firetruck nebulizer for emergency situations is about as convenient as carrying around a microwave.

This is your brain

Neuro-wise Dax is doing great! We’re down to seeing the neuro only once a year now, which is really quite a shame because his neuro is smokin’. Dax has two short-term seizure meds we can use now, one for prevention during viruses, and one for any seizures lasting over five minutes, and between those two I think we can conquer the world. My mom refers to the preventative one as “The Grandma Pill” because her biggest fear with keeping him overnight is him having a seizure during his witching hours, 3-5AM, and her not knowing what to do… So now she can just give him a pill at bedtime and they can live happily ever after ;) Such a pansy! Ha!

This is Dax's brain. (His brain is cooler than your brain.)
Endocrinology-wise Dax continues to do great, but he does now officially have a new diagnosis. They’ve batted septo-optic dysplasia (SOD) back and forth since he was less than two lbs, but it never stuck. After the end spoke with the neuroradiologist who read Dax’s MRI from when he had meningitis in July, they came together and made it official… And the part that may be exciting, or maybe not depending on the research I’m reading at the time, is that SOD complex can include multiple midline structures missing in the brain… With the cerebellum, pons, brain stem, septum pellucidem, and corpus callosem all being, ding ding ding, midline structures. So do we finally have a reason for the neurological abnormalities? Or, if you’re missing your septum pellucidem and there’s anything else wrong with your brain they just go ahead and lump it under an easy diagnosis? I dunno. Guess I never will.

But here’s what I do know. A few years ago ROP was the leading cause of blindness.  Currently, SOD is the leading cause of blindness. Dax has both. Do you know why he can’t ever find his socks? Because he has a penis ;)

Hmmm, what’s left…

Ear nose and throat…  His tubes have officially come out, and he hasn’t kept fluid back there chronically since, so maybe we’re done with those :)  His vocal cord is still paralyzed, and I still enjoy a very frustrating game of Mexican standoff with the ENT every six months over what we should do about that. I will be beating that dead horse again in May.

He had another swallow study last week and, although I was hoping for maybe the okay to move to nectar thick liquids, it looks like we’re stuck at honey-thick for now. He’s made great improvements with swallow, but you couple a delayed swallow with a paralyzed vocal cord and you’ve got a recipe for aspiration. That being said, he just penetrates now and he’s able to clear it effectively, so trials with thinner things are still a go, we just can’t run wild with it.

As far as eating, he’s a typical toddler with a fickle palate, but that kid will eat until you want to puke for him! We still do 600 supplemental calories a day through the g-tube, as well as supplemental fluids through the g-tube, but that kid can put away some groceries. And after countless hours of swallow therapy and oral motor exercises, he finally has a completely normal chew… That is a very, very big thing!!! I can remember my goal being to one day be able to give him a small chicken nugget and him be able to eat it without choking… And now he eats burgers and slices of pizza :) Next stop? Vegetables!

Oh, and finally, a few weeks ago Dax lost a tooth. We don’t know where, and the Tooth Fairy said digging through poop was not in her job description. One green tooth down, seven to go!!!

Holy crap, that’s a lot of info. Thankfully Ty is much easier.

Ty is a 33-lb, 35” tall force to be reckoned with. At two and a half, I would have hoped he would be talking more by now, and, well, he’s not, but he has no problems expressing his opinions… Not that he ever has. He never really babbled, and he’s still got some sensory stuff going on, so I’ve waffled back and forth on whether I’m worried or not worried or whether I think it’s autism or sensory processing or ADHD or just that he has a penis or all of the above. He did finally pass a hearing screening, so we know he can hear, and he does follow instructions that are important to him, so I know he can follow one-step instructions…

He also has the ability to watch a movie a couple of times and act out the ENTIRE movie, scene by scene, character by character, with great enthusiasm and follow through…  Donkey gets catapulted across a ravine? Ty runs across the living room and dives behind the couch. Oh yes. Elmo giggles for 4.75 seconds and then feeds Dorothy? Ty giggles for 4.75 seconds and feeds imaginary fish food to a toy.

I tell everyone now that Ty is actually my brain-damaged child because he acts like his dad. Is that wrong? Nah.

(I’m reminded with these two children I have of the Bill Cosby, Himself video. The “Brain Damaged” and “You see we are dumb, but we are not so dumb” parts come to mind quite frequently. If you live under a rock or are under 25 and you’ve never seen that film, find it right now and watch it. Older than dirt and funnier than crap.)

At any rate, Ty is in Early Intervention and is also in speech therapy.

(If you’re keeping score at home, that means 1.5 hours of teacher, 1 hour of speech, and 1 hour of TaeKwon Do for Dax on Monday, 1 hour of speech for Ty, 1 hour of PT, and 1 hour of speech for Dax on Tuesday, 1 hour of Early Intervention for Ty, 1.5 hours of teacher, and 1 hour of speech for Dax on Wednesday, 1 hour of speech and 1 hour of PT for Dax on Thursday, and 1 hour of OT for Dax on Friday. Thank God for Nana and for flexible work hours, because I’m tired just typing that out.)

What. A. Hunk.
Back to my TyTy, the general consensus is he’s obviously behind the curve with speech. He says “muk” and “deuce” (milk and juice, of course) pretty consistently, and he signs “all done” very consistently. We also get the occasional “bite” for food, and a “mama” and a “dada.” He’ll attempt to repeat anything you prompt him to say, although his approximation might be a *little* off… Like when I ask him to say “cookie” he always *clicks* in what we have affectionately begun to refer to as “Tyhili.” (Swahili, get it?;) That being said, he of course can say, sing, and identify the entire alphabet and his numbers up to 12.

Of course.

The rest of the general consensus is that he’s quirky but he’s one of those kids who develops in other areas before speech. He’s ahead of the curve with gross and fine motor, he’s quite brilliant with reasoning and cognitive skills, and he can repeat the inflexion and volume of every utterance of every character in a friggin Disney movie after two sittings. He’s a strange little bird, but damn he’s cute.

He’s also the best cuddler there has ever been in the history of the world. And he will spend five minutes kissing and hugging me when I pick him up after work. And, really, what could be better than a man who is a good cuddler and doesn’t ruin it by talking! Ha!

Could that be the end of my update? Wow. I think that leaves room for more pictures. I’ve neglected showing off how cute they are for far, far too long!

Daddy's hilarious ;)

Dax as a sheep in the Christmas play

Dax was Popeye for Halloween! 'Cause he's strong til the finish ;)
Oh, yes, TyTy was Fat Elvis for Halloween.

Life is good :)

Love. And, yes, Dax is totally stealing 2nd.

BTW, the non-cell phone pics are brought to you today by our friend Dan... How awesome is he???

Friday, February 10, 2012

A little present from Sweet Baby

Sweet Baby Chase's mama put together a video of his first two years now that she can share him with the world... And now I am sharing him with the world ;) I can't watch this video without thinking what his life could have been like, would have been like, if God hadn't put him with Josh, Tonya, and Landon. What a lucky little family they are :) And how cute is he, seriously?!

Monday, February 6, 2012

But why is the rum gone?

Something amazing just happened. (Prior to Poopapalooza.)

Borderline miraculous, possibly.

I went away. On vacation. Without my children. And I relaxed. And it was unbelievable.

Months ago my friends Lynn and Jason decided I needed a vacation. They were right. Never would I have ever done it for myself, and if I had I would have backed out long before the trip actually came to pass. If they had not given me the trip I never would have gone. I doubt they’ll ever really understand how eternally grateful I am for them knowing what I needed when I needed it. Wow.

We cruised from Tampa to Cozumel. I had some alone time when we embarked where I tried to read, but mostly just had a panic attack that if anything happened to my babies from that moment on that there was absolutely nothing I could do about it.

Rum helped. More rum helped even more.

The next day we read and laughed and sunned and ate and drank and drank… Again, rum just makes everything better, doesn’t it?

Some new friends, lots of vitamin D, and a fabulous book didn’t hurt. Food for the soul.

We got pretty and ate and laughed and… drank more rum…

Kids? What kids?

Our day in Cozumel was perfect. 80 degrees, quiet stretch of beach, and bottomless margaritas. I don’t normally know Spanish, but after a few margaritas I became quite fluent… Lynn, who’d had substantially fewer liters of alcohol than I did an excellent job babysitting me and did my shopping and got me back to the boat safely and on time… And translated my Spanish to the locals who needed to know more than that I was a “muy blanca borracha,” or “very white drunk.”

The next day brought more sun, more rum, more food, more laughter, and more relaxation.

And more rum. Did I mention the rum before?

Four days of taking care of Mollie. Four days of no responsibilities, no diapers, no paperwork, no housework…

It was good for my soul… my heart… my mind… Probably every part of me except my liver, and it will recover soon enough.

I spend so much time telling mothers that they have to take care of themselves first, that they can’t take care of a family if they aren’t taking care of themselves. I’ve always said it, but I’ve never actually done it, and, wow. Four days of recharging my defunct batteries has given me more strength and motivation than I’ve had in a very, very long time.

Now I can’t figure out how I’m going to make it through the rest of the year without another one!