Thursday, July 30, 2009

Self-Feeding


With pizza! He looked so toddler-esque doing this that I just had to preserve the memory! Sorry about the picture quality. His face was covered in pizza sauce, and of course I couldn't get him to look at me and smile. I think he was watching Handy Manny.

Monday, July 27, 2009

Pick Your Battles

So if you've been reading The Daily Dakin for any amount of time, you might have noted that this boy is a stubborn one. Don't get me wrong--I have said it a million times and firmly believe that Dakin is still breathing because he is too darn stubborn to have quit the night before he 'crashed,' and I am grateful for that hardheadedness. Occasionally, though, it manifests itself in strange ways--with the eating battle, for instance. And the new battle is over vocalization. Dakin should be talking more than he is: cognitively, he is perfect, and his none of the necessary musculature has been affected by SMARD. So why is the boy not talking?!?!

We have come to a few conclusions:
  • This is one of the very few things he controls (along with the eating). So it has to be under his conditions before he'll choose to say words. He does have a large vocabulary, but if you ask him to say something, he won't (he can, so it's not apraxia or anything like that) because he's choosing not to.
  • For a child with a neuromuscular disease, he moves a LOT. Speech Therapist thinks that he is concentrating on that at the moment--when children learn to walk or crawl oftentimes the vocalizations will cease somewhat until they get it down--they can't do two things well at once.
  • He is constantly surrounded by people who cater to his every whim, so all he has to do is grunt and look at whatever he wants and he gets it (not a great thing, but as he can't get toys, etc. himself that's just the way it has to be).

So, we (Speech Therapist and I) have decided that he will talk talk whenever the heck he feels like it, the same he did with the eating issue. I think the key here, though, is not to force him or fight him about it, as he proved with the eating that approach does. not. work.

Boo. I really want to know what's going on in his head. Guess I'm going to have to wait.

Thursday, July 23, 2009

Cups

Dakin's new favorite toy is a set of stacking cups. He has gotten very good at taking them out and putting them back together again, but his favorite activity is throwing them across the room. Thought you might enjoy a video.

In other news, I got to sing him to sleep yesterday--I don't get to do it much anymore, but when he laid down for his nap, he was at the right level of sleepiness for me to lie next to him and sing him away.

He's been pretty chill the last few days, and kind of sleepy. I don't think he's getting sick--maybe just a growth spurt. The weather here is too humid to take him out, but I'm hoping for a break from that soon (East Texans, read: October...sigh...) so we can get him out again. I think he's bored.
video

Friday, July 17, 2009

Photo Friday


Largely because I have nothing else to write about...I'm grateful there's nothing else going on. But here's a cute boy for you. The shoes are so big because they have to accomodate his AFOs (Ankle-Foot Orthotics).

Tuesday, July 14, 2009

Neurology Trip

Wow...we were gone forever!!
The visit with Dakin's neurologist, Dr. Iannaccone, went very well. We are so lucky to have her as a doctor--she is incredibly knowedgeable, and is on the FSMA (Families of Spinal Muscular Atrophy) board of doctors, so she really knows what she is talking about. It was she who decided to test for SMARD when no one else knew what was going on. Anyhoo, she said we were doing a great job with him (always nice to hear!!!) and that he looks like he's doing great, especially with the eating. I picked her brain with some SMARD questions--who is doing the research, can the specific mutations indicate weaker/stronger cases, etc. The research is all going on in Europe, which I figured, and she answered the rest of the questions as best she could--really, SMARD is so 'new' a disease that they just don't know a lot of answers. And that's ok. She approved of our ideas to help raise SMARD awareness, so I'm feeling pretty good about that...more to come on the subject!!
After, we chanced a visit to a restaurant--this was only the 4th time Dakin had been to a restaurant since birth, so he was pretty fascinated. We went to India Palace, which is one of the best Indian places in Dallas (SO YUMMY), and he was intrigued by the dim lighting and all the people there. They were so kind in accomodating us--which I know, legally they have to do, BUT they don't have to be nice about it, and India Palace was.
This is Dakin enjoying having bites of my ranch dressing. See how dark it was in there? His mouth is white, you just can't see it!
Dakin is very interested in drinking from cups now...something we'll have to explore, as he is still on a bottle.On the ride home he was absolutely miserable...tired boy. He's not used to sitting up that long.

The other neat thing he did today was drink from his bottle sitting in his chair. I didn't think he could do that sitting up. He just never ceases to amaze!

Monday, July 13, 2009

Nothing to Report

Yeah, so it's been a week since I updated last, and I apologize...I had two relatives ask me to do it, and so here we are. I'll update again tomorrow--Dakin has a doc appointment, but for today, there's really nothing much to say. He's had a quiet week, which he really needed. The only two things to tell about really is that he is eating a ton more (now that we've figured out the constipation issue) and he got in trouble at church yesterday--kind of. We put him up on the bench with us and he decided it was ok to lick said bench. Well, we Lysol the benches before we sit down, but still...so I told him 'no' and he just grinned at me and went to do it again--I kept telling him 'no' and he kept giving kisses to say sorry but would continue to attempt to lick the bench. Daddy was laughing at this, and of course, as soon as Dakin realized he had Da Da's approval, he kept right on doing it. Sigh. 'No' used to work wonders--but obviously means nothing now. I have once more been outmanuvered by a toddler.

Monday, July 6, 2009

Busy Busy Two Weeks!

We have had such a whirlwind two weeks I have just not even taken the time to blog about it all! Here are the highlights:

  • Our East Texas Signature Drive for the Petition to Cure SMA got great results! We started at 57 (boo) and we ended up with 292 signatures! YAY! Great job, East Texas!
  • Dakin was a little media magnet--one newspaper article and two news spots--this pic is LaKecia Shockley of KLTV news, the reporter who covered Dakin's story. She was wonderful!!

  • We met with Congressman Louie Gohmert (R) to discuss the SMA Treatment Acceleration Act. He is a wonderful man and we hope that he will decide to cosponsor the Act. The other little boy and his mom in the picture came with us to meet him--Matthew has Type 2 SMA.

  • We had the amazing chance to meet Gwendolyn and her sweet parents.

This may not seem like a lot, but for a little boy who doesn't go out a great deal, it was very busy two weeks.

Saturday, July 4, 2009

Happy 4th!


One of the things that most people don't know about me is that I never saw fireworks against a dark sky until I was 9 or so. Yep. I'm from Alaska--born and raised--and up there at this time of year it is twilight all night long. I have very vivid memories of watching fireworks at midnight against a still-blue sky, softly backlit by the Alaskan summer. These are some of my favorite memories.
Tonight, I had the chance to make another wonderful memory--watching fireworks on TV with Dakin. He enjoyed them very much, and kept flapping his arms and looking at his butterflies that are hanging from the ceiling fan. I have no idea how he knows that they are in the sky on TV (he flaps his arms when he sees something in the sky), but he did. Smart kid.
Anyway, I'm glad I got to make another wonderful fireworks memory with my sweet boy. Happy 4th to all!!

Friday, July 3, 2009

Gwendolyn and Harry



We are so glad to see that Gwendolyn and Harry have met up at last!! Check out her smile when Victoria hands her to Harry--she is so happy. She is such a precious girl and Harry seems like a wonderful man.

Wednesday, July 1, 2009

Dakin's First Date and the Power of Hope

We had the most wonderful day today! We got to have lunch with Gwendolyn and her wonderful parents, Bill and Victoria. I'm sure most of you know Gwendolyn and her family, but for those of you who don't, Gwendolyn is a beautiful little girl who has Type 1 SMA. Her family, always thinking of new ways to raise awareness of SMA and the Treatment Acceleration Act, made this road trip not only a vacation, but an opportunity to raise money for SMA. And they stopped here!! It was wonderful to get to meet them in person--in the few months I have "known" them I have come to feel quite a kinship with them. It was truly a life changing experience to meet Gwendolyn in person. She is angelic. If you haven't, please check out her blog and donate to the Sponsor-A-Mile to End SMA--10.00 per mile on this trip. Thanks so much, guys, for taking the time to visit us! We wish you were closer!
Dakin would NOT cooperate with the camera...Gwendolyn looks perfect, though. If you look closely, she is wearing a little purple butterfly clip--Victoria said she wore it for Dakin, since they are both enamored with purple butterflies.
All of us, in the 100+ degree weather...I grabbed this next shot after they had gone back to their RV. I thought the billboard behind where the RV was parked was beautifully appropriate--it says "The Power of Hope." In all the interaction I have had with the Strongs, they have always emphasized hope in the fight against SMA: hope that someday it will be cured. Those who have donated to the Sponsor-A-Mile to End SMA believe in this power. Ultimately, that is what this wonderful family represents to me: the power of hope. They, through the work they have done with the petition (and everything else), have given so many SMA families hope, and that is a gift I can never thank them enough for. I'm probably not expressing myself well, but it just struck me as I was getting in the car how appropriate it was that they were parked in front of this billboard--on a stop on their journey sponsored by hope.