Blast From the Past #1

Before we started The Daily Dakin, we had a private blog for family. It's been well over a year since I posted there, and since this is our primary blog now, I thought I'd start transferring some of those posts over. So here's one from May-ish of 2008 (I can't believe it's been nearly two years!!). Since that time, Dakin lost his ability to sit up unsupported, but hey, sitting up isn't all that, right? :) He also had pretty bad eczema at that point, a problem that has fortunately resolved itself.

Dakin wasn't too sure about the pool--we thought he would love it since he loves his bath so much. He does, however, love his sunglasses!

Abridged Anatomy of a Vent Clinic Day

Yesterday was that time again...Vent Clinic day! For those of you new around here, every once in a while we go to Our Children's House at Baylor for Vent Clinic, where we see Dakin's Team of Awesomeness. Said Team includes his two amazing pulmonogists--Dr. G and Dr. C, though we only see one of them each visit--his nutritionist, the RT who checks his vent, the tech who weighs and measures him, his nurse practitioner (who is an angel on earth) and his outpatient case manager (who is a lioness: when she roars, things get done). He also sees the vampire lady who draws his blood gases and the X-ray lady who takes pics of his lungs, but he doesn't like them, so they are not in the Team of Awesomeness.


Anyhoo, I thought you all might like to see a small glimpse of a Vent Clinic Day, as it is quite the undertaking around here. As I said, this is the abridged version, as I forgot to take pics for most of it, and the whole process lasts for 8-10 hours anyway. So here you go:


6 am: Up, breathing treatment done, attempted to feed him but he outright refused to eat.

7:10 am: Take Dada to work so we have the car.

8:00 am: On the road. (This little DVD player was the best freaking 100.00 I ever spent)

9 am: still on the road.

10 am: still on the road.

10:15: arrive at Medical City Dallas (this is not a usual Vent Clinic Day feature--he was just getting a last, and unexpected, RSV shot).

10:30: back on the road to Baylor.

11:00 arrive at Baylor, sign in.

11:15: crying because he doesn't want to get weighed or measured.

11:30: feeling better.

11:30-12:30: attempt to feed him, he eats a little but wants to play with my spoon instead.

12:30-1:15: RT comes and checks vent, flirts with Dakin.

nurse comes in, asks questions, flirts with Dakin and gets him a sticker.

nutritionist comes in, asks questions, flirts with Dakin.

x-Ray lady comes in with helper, attempts to flirt with Dakin but he's too mad from getting x-ray done.

vampire lady comes in to take blood gases. Mommy sings to help Dakin calm down, but it doesn't really work too well, and he gets a bandaid on his thumb.

1:30: things have slowed down, so we are thinking he'll take a nap. Nope. Also, x-ray lady leaves x-ray machine in hall in front of our room, Dakin gets upset and she pulls the curtain so he can't see it.
1:45: outpatient case lioness comes in, flirts with Dakin. He loves her. Talks to us, makes sure we're ok and there are no unresolved issues she needs to attend to.

2:00: wait to see pulmonologist and co. to make rounds. Maybe nap now?

2:15: still waiting. Dakin decides to stare out the window for a while. Another failed feeding attempt. (He refuses to eat while we're out...oh well)

2:30: still waiting.

2:45: still waiting.

3:00: still waiting, still no nap.
3:15: Dr. C and group comes in. Upon checking Dakin out, Dakin is declared 'excellent', the same term goes to his chest x-ray and blood gases. His weight gain is good, and he just in general looks great. Yippee! Mommy glowing from praise.

3:30: Dakin in car, chair deconstructed and placed in trunk of car, and everyone on the road again. Mommy and Nurse placing bets as to when the boy will fall asleep. Mommy says 5 minutes, Nurse says 15.

3:45: Mommy and nurse decide to get slushies to celebrate good report. Dakin still awake.

4:25: still on road. Dakin FINALLY falls asleep.

5:10: still on road. Dakin wakes up, wants to watch Rocket. Wish granted.

6:00: arrive home. Yay!

So that was our day. And a good one. It is definitely worth the 5 hour round trip driving to hear them gush about how well he is doing...aaaah.

Voice4u Review

A bit ago I was approached to do a review for Voice4u. Created by a special needs child's mom, Voice4u is an amazing little AAC (augmentative and alternative communication) program that helps children who can't communicate to have a voice of their own. Since Dakin is admittedly behind in speech, we have toyed with some AAC devices in the hopes of enabling him to communicate more freely, but this one is in a class of its own!

You download it to your iPhone or iPod touch, and from there all you have to do is scroll to the icon you'd like to use. Check out the pics: they're super cute.

All you have to do is touch the screen and your device will say the word pictured. It's great!! Now, the program comes with a ton of preloaded pics: emotions, things, greetings, etc., but one of the coolest features is that you can add to the library! Right away we added Dada, Mama, Jane, color and car. You can record your own voice saying the item as well.

You can even redo the existing pictures: if you want a specific picture for car, like we did, all we did was take a pic of our own car, record our sound bit saying 'car', and there we were!

Voice4u is incredibly easy to use, and our nurse Jane, who by her own admission is technologically challenged, started using the whole program right away. Dakin really enjoys it as well, and loves touching the screen over and over to say his favorite items.

The ease of use is added to by the touch nature of the iPod Touch and iPhone--even a soft touch, which is all Dakin can manage, is enough to make it work.

The only difficulties we experienced using this product is one that can't, unfortunately, be avoided with Dakin: the iPhone screen is so small, he would never be able to hit the buttons on his own, as he has little by way of individual finger movement. However, I think this problem (which is, again, only a problem for us) would be solved by using an iPad, which is much larger. I think it would be perfect then! I think due to the physical issues, the program is just a touch ahead of him at the moment, but as he gets older we are looking forward to being able to use it more and more, and especially once we get an iPad and the program is available for it.

Thanks again, Voice4u, for letting us try out your program! It's great!!!

If you're interested in purchasing Voice4u, you can find it on iTunes and in the App Store.

I love this boy!

Last March-ish I posted what I love about Dakin. I decided to do a similar post, since he has changed so much, and while I still love everything I wrote in the previous post, I have more to love now.

1. I LOVE the fact he is lying on the floor playing with his flashcards: with TWO arms in the air. Take that, progressive disease.

2. I love how he will furrow his brow when he's irritated--for such an ugly expression, it's beautiful on him.

3. I love that he lets me sing him to sleep.

4. I love that he has developed a way to let me know he wants me to hold him: he'll look at my shoulder.

5. I love that he wants me to snuggle him when he wakes up from his nap.

6. I love that he can 'ma ma ma ma ma ma ma ma ma ma ma ma ma ma' me all day long.

7. I love that he is becoming curious about other people eating: he makes a 'nah nah' sound and sticks out his tongue. I of course try to feed him then but he's not interested in THAT. Oh well.

8. I love that he is into sticking his fingers in holes. Trach, AMBU bag, my ear, whatever.

9. I love the look of pure joy he gets when we read a book together.

10. I love the silly huge grin he will sometimes randomly get right before he falls asleep.

11. I love that he dances when Elvis comes on.

12. I love the other huge grin he gets when "Ever the Same" comes on. It's our favorite song to sing together.

13. I love the glowering expression he gives me when I turn off his show.

14. I love that he will blow kisses when I pull out his "Animal Kisses" book.

15. I love how he finds random things funny: the other day I was lying on my bed kicking my body pillow up in the air. He thought it was hysterical and of course wanted me to do it forever.

16. I love how interested he is in cars, and makes sure he points them out to me.

17. I love how quickly he learns new things.

18. I love that he can stack his blocks now: three blocks high. He then knocks it down. That is, of course, the best part anyway.

19. I love catching him doing things I didn't think he could.

20. I love that he can bend his right arm up now while he's sitting up (again, take that, progressive disease), and when we hand him popsicle sticks sitting up, he reaches up to get them and then throws them on the floor.

21. I love that he complains now by making this horribly pained face (it's all an act) and saying, "Oooh! Oooh!"

22. I love that he likes to sit on the couch and watch TV. It's really cute, especially in a child who can't sit up unsupported: he looks so proud of himself.

23. I love that he can correctly do all of his puzzles now, and that he's smart enough that he's bored with them. (Back to the drawing board)

24. I love all the new syllables he's making now: ma moo, doo doo doo, da dee, etc.

I guess that's it for now.
I LOVE YOU, LITTLE BOY!

Billions and Billions of Daffodilions

That's what our day nurse said, anyway. Last week we had a chance to go to a local daffodil garden that was started by a lady sometime in the 1800s, when she had an entire railcar of daffodil bulbs shipped in to her eight acres of land. They were planted, and have subsequently multiplied over the years, and now there are truly billions and billions. We took Dakin out to see them, and you can imagine his pleasure to see so many yellow ('la la') flowers.. We tried to get some good pics, but the terrain was pretty rugged so we didn't get too many--we were busy trying to help Dakin not fall out of his chair while joking about him going where no handicapped child had gone before...anyhoo.

Appropriately wearing a shirt that said, 'Boys will be boys.' This is the raspberry face.

As you can see, it was a beautiful day, and I'm glad Jane suggested the trip. We got to go to Chili's for lunch too, back to the wonderful one where they are so accomodating. Good day.

Exciting News--Lemonade for Dakin

Sorry about the lack of posting lately...I've just been...off.


Anyhoo, I wanted to let you all know about some pretty awesome things going on. Firstly, there is a contest going on--it's the Pepsi Refresh Project, and they're giving away some serious money! StopSMA, an organization dedicated to curing SMA, is in third place at the moment. Please take a moment to vote here, and you can vote every day!



The next bit of news is thrilling for us: a friend of mine, from a website that I joined when pregnant (one of the best decisions I ever made...but more on that later. It will have its own post) has started a group to help raise money for Dakin's handicapped van. I haven't asked if I can use her name here, so I won't, but she wants to do a lemonade stand each year with her little one (who is the same age as Dakin) for a worthy cause, and she chose us this year.



Her plan is to encourage others to hold lemonade stands to help us raise this money. We are so flattered and humbled that we have been chosen for this...I am really touched by her friendship.



You can become a fan on Facebook at Lemonade for Dakin. Check it out! Maybe a lemonade stand is just what your neighborhood needs! *wink wink*



More on Lemonade for Dakin later as well...but for now.

To School or Not to School

That is really the question at the moment.


But Dakin isn't even 2.5 years old!! Why are you worrying about this already?

Well, 'cuz here in Texas special needs kiddos qualify for services through the school districts at age 3. Soooo...Dakin could attend school as early as next November 1st, in a class called PPCD. PPCD is a class geared toward special needs kiddos at age 3--helping them to adjust, as well as socialize and put them in a position where the adaptive technology team can begin to help. For Dakin, he wouldn't actually start start until next-March-ish, because he'd be homebound during the flu season, but he would be in the system. Presumably he would be in there for a year or so, depending on when their kindergarten cutoff is, then on to PreK and kindergarten.

I have been debating this for some time now, going back and forth between this and homeschooling. While I feel perfectly capable of homeschooling Dakin up to a point (I'm a teacher), I feel that in his situation it would probably be best to have him in a place where he would have access to the adaptive technology that would help him.

Besides the fact our local school district is tiny and renowned. Good stuff. I actually got to sub in the PPCD class the other day, and it's that that decided me.

So in a year, my baby will be in school! (for three hours a day) AGH!!!

Mud Hut Again

Look at these sweet boys! These are our buds Max and Spencer from across the street. Their awesome mom, Nichole, was the one who sat outside in the 100-degree heat to get petition signatures, if you remember. We are lucky to have such good friends.


Anyway, in my newfound not-so-nervous-about-germs state of mind, we have had a few little playdates with these guys. They are both so great with Dakin--Max is always making sure Dakin is included. These pics are from Mud Hut storytime--they came with us last week!! And here's Dakin's egg. Yellow, of course. Now it also has blue stripes and purple spots and butterflies. I don't have pics of Max and Spencer's eggs, but they enjoyed painting them. I think our nurse Jane is starting to hate the Mud Hut. See her squeezing that stupid AMBU bag? Bet you can't guess why...yep, we blew another fuse on the backup battery. We have been home from the hospital for nearly two years, and we have blown a fuse three times. TWICE of those times were at the Mud Hut. So next time we go with spare fuses. Won't get fooled again.

Hopefully Max and Spencer can go too!!

It's Nice to Be Wrong

No really, it is. I have to make a confession: I have been laboring under the impression for the last nearly two years that no one in the United States is researching SMARD.

I was wrong.

Victoria sent me an email the other day letting me know that she discovered that the National Institutes of Health is acutally funding SMARD research at the University of Pennsylvania. Dr. Zissimos Mourelamos is heading the project, along with Dr. Gregory Cox, another researcher in Maine. I was able to contact Dr. Mourelamos via email, and I found out some pretty cool stuff. His team is finding that IGHMPB2, the gene that when mutated or deleted causes SMARD, appears to play a part in translating messenger RNA. He attached a paper that I have not read just yet, as I have been in no-night-nurse-hazy-sleepy-fog and I know I'm going to have to be on my toes when I read it. My plan is also to send it to our geneticist and see what she can make of it.

Anyhoo, I am thrilled to be wrong, and joyfully stand corrected. I am so glad to have researchers paying attention to our little and far between disorder--thank you Dr. Mourelamos and Dr. Cox!!!

Ugh

That was today. Ugh. It started with the rain...cold rain. We had to leave at the crack of dawn for Dakin's first trip to the dentist. Woo hoo, lots of fun...yippee. He started crying the minute we walked in.

After some tears from Dakin and flirting from the hygenist, he finally acquiesed to having his teeth checked out. They look good, thank goodness.