Friday, December 31, 2010
What a year this has been. So much has happened...so much I dreamed of for Dakin. Visiting amazing places, acheiving amazing things. All in all, I can sum it up in a single sentence: in 2010 Dakin thrived. And I can't ask for more than that.
I hope you all have a blessed and wonderful New Year! And thank you all for your well wishes. I am now not sure if this is a cold or some kind of sinus issue, but he is doing better today, and I thank you!
Thursday, December 30, 2010
Ah well. It was bound to happen sometime. I can't keep Dakin wrapped in a bubble forever.
Anyhoo, it's just a lot of lung secretions and dribbly nose and fever for now. Any well wishes or thoughts on our behalf to whatever part of the universe you worship or don't would be appreciated...I am really hoping to keep this out of his chest.
Tuesday, December 28, 2010
Now for Volcano Nose. I don't think he's fighting off a cold because he hasn't had a fever, but boy howdy, the secretions have been non-stop. He's never been junky like this--even to his nose dripping. Of course, the nose dripping is a great source of amusement to him, and he has dubbed his snotty nose "volcano nose". He enjoys trying to make it erupt too--he laughs so hard when he blows his nose and gets snot out. Hilarious, right? Yeah.
Anyhoo, it was a wonderful weekend. We hope everyone had an equally wonderful one!!
Friday, December 24, 2010
"May Kibby" to you.
(**notes: you might be wondering if Dakin is wearing what appears to be a tank top in the dead of winter...well, he is. It's his spinal jacket undershirt and it's really warm. :) Also, Big Jet is the bad-guy character on Little Einsteins and Dakin's newest obsession, in case you were wondering.**)
Wednesday, December 22, 2010
Friday, December 17, 2010
Thursday, December 16, 2010
We were fitted for it a month ago--an experience I didn't write about, maybe because the whole thing was only slightly preferable to a stint in a gulag. Nightmarish, the fitting was.
Today wasn't much better--think maybe a root canal minus the drugs. The second we parked the car Dakin was saying, "No guy up! No guy up!!" (The orthotist had to stretch him out for the fitting, suspended over two stools--oh, it was horrible). He kept with that same theme the whole time we were in there--'no guy up' and 'no owie!'. Tears and gasping later, we got the jacket on and all of a sudden he was three inches taller. Amazing.
It will take some getting used to, but he only has to wear it when he's in his stander, lying down or in his old stroller. So yay. He rode all the way home in it and was happy as a clam.
Wednesday, December 15, 2010
Bridging the Gap!
Bridging the Gap is our new SMARD blog, created for these intents:
- To give the SMARD community a place to communicate
- To help raise awareness of SMARD
- To forward SMARD research
Thursday, December 9, 2010
1. When Dakin is lying on his side, he can raise his leg in the air and leave it there pretty much indefinitely. He was playing with his markers on his side and a few minutes later I came to pick him up and there were thirteen markers up his pant leg. He just put them in the leg hole near his ankle. Silly thing.
2. With the aforementioned markers, he had them to play with before he went to sleep the other day. The room was darkened, I was on the computer and he was being quiet, so I wasn't watching him too intently. When the lights came on after his nap his entire face was green. He had managed to get one of the caps off, and, well...he looked like a black ops guy.
3. He has a few favorite phrases: "Over that way", "over here", and "broken" are among them. He tells me where things are and which way he wants to roll with 'over that way' and tells me which eye itches with 'over here'. He was drawing a truck the other day and left part of it off. I asked him where the rest of it was, and he looked at me and said, "broken."
4. He also loves to say "fix it" after telling me something is broken.
5. If something isn't in use, it's taking a nap. If I put down something he's looking at, he'll tell me it's taking a nap. He snuggled his hand up next to me the other day and it was, too, taking a nap.
6. I think it's adorable that he can tell me which Imagination Movers episode a song comes from within three seconds of the song starting.
7. He says, "goo me" after he burps.
8. He was hiding under something the other day and we asked him where he was. He said 'gone.' That's his other favorite new thing to say. If I am searching for something, it's always 'gone.'
Hm, I think that's it for now. Again, this post is more for me. But I hope you enjoyed it anyway.
Sunday, December 5, 2010
See our same sweet Santa? This man is so kind and gentle with Dakin, and remembers him every year. He loves seeing him, even if the feeling is (at least this year) not mutual (boy, you should have seen the tears!!).
And again, our wonderful friend T at the mall made us an early appointment, came in early so we could do this, let us Lysol the set (and Santa himself!!), and even got Santa a new pair of gloves right out of the box just for Dakin. I know I have said this time and again, but we are unspeakably grateful for these people. Three years in a row now they have bent over backwards for Dakin. And we can never repay them for it. We are so blessed to be put in contact with people who want to help Dakin. Truly, immeasurably blessed.
Thursday, December 2, 2010
The tiny but awesome SMARD community has come together to help this study happen. My plea to you, dear readers, is that if there are any other SMARD families out there, please contact me so we can get you involved in the study. The more, the better!
I personally want to thank Lisa and all her hard work. I can't believe how far we have come in the last two years since Dakin's diagnosis! When we began, there were next to no other families to commune with, little by way of information on SMARD, and no research we were aware of. Now we have (found out about, thanks, Victoria!!) genetic research going on, as well as the promise of active research, as well as a wonderful community. YAY!
Monday, November 29, 2010
Daddy started out like this, but ended up getting into the decorating. These are the only pictures His Majesty would allow me to take.
Friday, November 26, 2010
We are grateful for:
- The people who provide the electricity to run Dakin's ventilator
- The doctors, nurses, therapists and case managers who worked hard in school to become great, and who continually work hard to keep Dakin healthy
- Our amazing nurses, who love Dakin like their own
- A medicaid system that has provided for his every need
- An insurance company that has treated us fairly and with integrity
- Yogurt and Carnation Instant Breakfast, since that is the bulk of what he eats
- The Imagination Movers, Mickey Mouse Clubhouse, Chuggington and Little Einsteins, for getting him through countless vest treatments and eating sessions
- Our families, for being there for us and loving us
- Our church family, who has loved and supported us like a real family. We truly feel they are one
- Dear friends with whom we share the weight of a medically fragile child
- The countless people who bend over backward for Dakin without even knowing him
- Powerchairs and suctioners
- And most of all: a little boy who shines with life and happiness. Who believes he runs the world and lets you know. Who loves folding clothes and cleaning closets, singing songs and reading books and playing with play-doh. Who is the light of our world.
I could go on and on. We are truly, fully, and immensely blessed.
We spent the day cleaning closets and eating. (Look, that's just how I roll. I like cleaning. :) ) At dinner, Dakin said yes to being grateful for Mommy, but then said no to everything else until we got to Kamie (you may remember his church girlfriend). He's evidently grateful for her. He decided he was grateful for his nurses too. Dinner was so much fun--with him at the table, of course refusing to eat anything, but yakking up a storm and running his little hand along the table. He did manage to stick his hand in the cranberry jello...I'm grateful that he can do that too.
We hope everyone had a wonderful Thanksgiving!
Tuesday, November 23, 2010
We took Dakin out for our customary walk on nice days. I wasn't keeping much of a conversation up, thinking as I was.
But then it happened.
The butterfly. It flittered right across our path. Orange and perfect, at exactly 12:15 pm.
It was a message to me: a message of how Jonas' parents are being cared for by unseen hands, and how we will be cared for when our time (I hope it's a billion years from now) with Dakin comes.
That little butterfly was a tiny bit of peace for me. It reminded me of a quote I read recently:
Joy is not the absence of pain. It is the presence of God.
Rest in peace, sweet Jonas.
Friday, November 19, 2010
These are the lyrics to 'Butterfly' by the Imagination Movers. If you know the song, it is an upbeat tune, but the lyrics have always touched me and made me think of our SMA/SMARD kiddos. I can't listen to it without crying. I thought it might be appropriate, so here it is:
Butterfly won't you spread your wings,
Above the green grass and everything.
Got to fly.
Every color floating under the sun,
Paint a picture for everyone.
In the sky.
Butterfly won't you fly away,
A flash of color on a sunny day.
Friend of mine, won't you spread your wings and fly,
(Bye bye, butterfly, hope he's never far away.)
Butterfly floating in the breeze,
Across the flowers and over trees.
High and low.
Flitter out, putting on a show,
Fly away when I get too close.
Where'd you go?
Butterfly, time to fly away,
A flash of color on a sunny day.
Friend of mine, won't you spread your wings and fly,
(Bye bye, butterfly, hope he's never far away.)
Pretty little butterfly,
Painting pictures in the sky.
A flash of color overhead,
Purple, yellow, bronze and red.
(Bye bye butterfly)
Pretty little butterfly,
(I hope he's never far away)
Hope you're never far away,
(Hope he's never far away)
Hope to see you in the sky,
(Hope he's never far away)
Flying on a sunny day.
The symbol of the butterfly is a powerful one for me, always has been. It has always struck me as a perfect symbol for a child who can't move on their own, as well as being a good description for these kids--they come, they touch our lives in so many ways, and then they've flown away.
Jonas is now free to spread his wings and fly. We will be looking for you on sunny days, and hope you're never far away.
Monday, November 15, 2010
Friday, November 12, 2010
"Good night. Good night Mommy. Good night Daddy. Good night car. Good night Mommy. Good night car. Good night big car. Good night merry-go-round."
Cute. Cute cute cute.
Tuesday, November 9, 2010
Saturday, November 6, 2010
Friday, November 5, 2010
Sunday, October 31, 2010
A birthday party!! We held it at a local Rotary Club park, which is specifically set up for handicapped people. It's perfect--the tables are all longer on the ends, the playset can accomodate a wheelchair, etc. And as I had made a pact with the weather gods to have a sunny day (sorry, East Texas, as a result of that pact, I'm afraid some ugly weather is coming our way!) it was absolutely beautiful on Saturday. We decorated pumpkins and cupcakes and attempted to break Dakin's pinata--boy, that didn't go well. When he saw everyone beating his ghost with a bat he got really upset. So we broke the candy out of the bottom and the ghost is sitting here in my living room intact.
It went great, considering this is the first birthday party we have had with actual children. We had a great group of kids--dressed adorably in their costumes, but I didn't get permission to put up their pics, so you'll just have to imagine.
Saturday evening we had the Trunk or Treat at the church. Dakin and Mommy, who tried to do a Snooki pouf. Boy, was that a lot of hairspray.
And then today, Dakin's actual birthday. We went to church, relaxed, had dinner and cake, and opened presents. Dakin's cake was supposed to be the awesome pumpkin one from last year's Disney Family Fun magazine, but I ran out of time. So there you go. He knew it was a birthday cake, though, and said so very clearly.
Wednesday, October 27, 2010
Saturday, October 23, 2010
No, really. Dakin ate THIRTY-NINE caloric ounces today, with the final total plus water coming to, like, fifty five. Piglet! I don't know where he's putting it all. I checked to see if it was dribbling out his ear, but it's not. So I obviously need a permit if I'm going to keep pigs in the city limits.
Anyhoo...today was a great day. After he woke up from his nap, we played and snuggled on the couch for a while, and then took his new powerchair out for a spin. He really wanted to see the truck parked across the street, so he made his way over there. He did great driving--took himself all the way down to the end of the street and partway down the other. The other day he could only go a few inches! Major progress. We would have stayed out longer, but this huge storm complete with tornado warnings blew through, so we hurried home, turned on the Halloween lights and sat under the porch for a few minutes before it got going. Good stuff.
Monday, October 18, 2010
Yep! A ramp. Which may seem like a small thing, but it's huge. See, Dakin's new power chair, which weights approximately 4,000 lbs, is--understandably--difficult to get up in the house over the threshhold. We had to put it at it's top speed and hope it didn't spin out and slam Dakin into the wall.
Well, the other day we had a carpenter at our house working on the new door we got put in. Upon seeing all the spare wood in the back yard, day nurse Jane asked if we could use some. The carpenter asked what for, and Jane showed him.
And a few days later, we have a ramp. No charge--a professional, perfect, sturdy ramp.
As I have said before, it never ceases to amaze me the lengths people will go to for Dakin. Thank you so much again, sweet carpenter! This ramp will make our lives so much easier!
Friday, October 15, 2010
Take Ma Mao here (aka How Ma Mao--for those who don't speak Dakinese, that's Warehouse Mouse from Imagination Movers). I had wanted to get Dakin a Ma Mao for a while, but they're not currently being sold, and the only one I could find was 35.00 on eBay. So in steps Day Nurse Jane's sister--I won't say her name since I didn't ask her if I could, in case you're wondering...
She is a maven of all things involving sewing (she made Dakin a beautiful blanket a year or so ago--don't know why I never blogged about that!!), and so she offered to make Dakin a Ma Mao. Her granddaughter insisted on watching an episode right away so they would be sure to get him right. And here he is.
Tuesday, October 12, 2010
Sunday, October 10, 2010
Firstly, he has decided he's in love with Lucy from Peanuts. We've watched "It's the Great Pumpkin, Charlie Brown" at least 4 times this week. He just wants to see her...it's cute. Though she's horrible (and we have had that discussion with him) there's just no stopping the love for "Lulee." In this pic he has her mask on his head (it's a vinyl sticker from his book version of The Great Pumpkin).
Secondly, he's discovered he can whisper. Today in church he was being his loud self and I was trying to shoosh him, so he started whispering--very cute. That was just while the Sacrament was being passed, though. After, he went right back to being loud.
Let's see...what else? We went to a local craft fair on Thursday, and the Kiwanis had a giant (I mean massive) black Newfoundland walking around on his leash. Dakin of course fell in love with him (his name is Rico). As we stood talking to Rico's owner, Jane (our day nurse) asked the owner what kind of a dog he was. Without hesitation, Dakin piped in and said "black." Well duh, Jane.
Dakin's been learning the 'weirder' colors--lavender, sky blue, olive green. He likes to tell me what kind of color it is after naming it. Ex: He'll say 'lalaba, ty purpa.' (Lavender, type of purple). Well, the other day he had a plain purple marker in his hand and said, 'purpa. Ty purpa.' Yes Dakin. Purple is a type of purple.
We've just been up to a ton of stuff this week. Mud Hut and the library (his favorite place besides Walmart) for storytime, the park for playgroup and the craft fair. I got to take him with me to the library and Walmart again yesterday, as well as Hobby Lobby. With all this newfound freedom, I am reaaaaaaaaaaaaaaaally going to hate going on lockdown... :(
Friday, October 8, 2010
Thursday, October 7, 2010
Tuesday, October 5, 2010
Wednesday, September 29, 2010
Sunday, September 26, 2010
Here in Texas, Dakin would qualify for services through the local school district here in a few weeks when he turns three. We had decided to wait on the program a year for germ concerns and were going to stick him in next year, buuuuuut...
Nope. I'm going to homeschool. And here are my reasons:
3. I am a product of a mother who worked in the public school system for nearly three decades, and I have worked in it myself. She saw appalling things happen to the 'special needs' kids. So did I. I won't have it. Anyone that spends any time with Dakin can see that he is clearly intelligent, but due to his physical limitations he will be considered special needs. I will NOT have him labeled, placed in box and left there (it happens!!!). Won't do it. Saw it happen, and I won't. No no no.
5. Dakin, at not even three, can count (he got all the way to 29 the other day!), knows his letters, all his colors, shapes and animals. Even the weird ones. I don't want him sitting in a pre-K class wondering why he's the most advanced kid in the room. Bored kids cause trouble.
6. I just feel good about it.
7. I forgot to mention germs.
Now, don't get me wrong. I am a graduate of the public school system. I got an amazing education. If Dakin were running around like other kids, this would not even be a question. He would be in public school. But I think, considering everything, this is best for him right now. If in a few years he decides he wants to be in public school, I will put him in.
I'm actually really looking forward to it. I have a degree in education and have done a lot in curriculum planning, so I know I have my work cut out for me. Starting up next fall!! Wish me luck!
Friday, September 24, 2010
Our OT extraordinaire came up with the idea of using his old IV pole to rig up a thingy that would enable him to lift his arms. He loves it! Unfortunately, he has decided to use this newfound ability for evil and proceeded to color all over his face today.
This pic isn't great, but it more or less shows the setup. And yes, that is a skeleton mat in the back...I'm a little early--don't judge me.
Oh, and he was such a pill as he was coloring on himself. I told him multiple times to quit and made him say sorry. One time I turned around right after he had just barely gotten done saying sorry, and he was at it again, with a big old smile on his face--as if to say, "neener neener."
Only six more weeks of the terrible twos...they're lovely and well-behaved at three, right?!
*edited to add (thanks, Dana!) that despite my griping, I am thrilled that he can color all over himself. It is truly a blessing. And in the midst of scolding him, I was trying my best not to laugh. It was a precious moment.