Tuesday, March 30, 2010
Wednesday, March 24, 2010
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.
Monday, March 22, 2010
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!
Saturday, March 20, 2010
Wednesday, March 17, 2010
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.
Thursday, March 11, 2010
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!!!
Wednesday, March 10, 2010
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.
Friday, March 5, 2010
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!!!
Monday, March 1, 2010
After some tears from Dakin and flirting from the hygenist, he finally acquiesed to having his teeth checked out. They look good, thank goodness.