Tuesday, September 29, 2009
It may seem like something small, but it really means a lot to see so much diversity in Handy Manny. It makes me happy to know that someday Dakin will notice Sam or the other little boy and say, "hey, he's like me," and he'll feel included.
Now if we could only get a chaired kid on Little Einsteins...my joy would be complete. :)
Update: Dakin is much better. He wasn't on 02 last night. I'm still nervous though, as we learned that 2 kiddos have died of H1N1 in our area this week.
Sunday, September 27, 2009
OK, so...still not sure what's going on with D. He came off the 02 last night and pulled a nice 96-97 O2 sat until morning, but his heart rate is higher than I like. We'll see how he does tonight, now that we have a nurse back. It's been a long week.
Saturday, September 26, 2009
We also don't have a nurse tonight. Gonna be another long night. Prayers please.
Thursday, September 24, 2009
OK, guys, we only have 5 days left to enter! Come on...you know you want to! All you have to do is blog, tweet or facebook about Pound Out SMA/SMARD, and you can be the lucky recipient of one of these great prizes:
- Set of semi-precious earrings, made by yours truly
- Beautiful bow gift set provided by Littlest Boutique
- NEW! A 10.00 gift certificate to Bouquet of Pixels--an digital scrapbooking store with AMAZING designs! Even if you don't enter the giveaway, please be sure to check Bouquet of Pixels! (that's who the above ad is from!)
So here's an update: I have lost 7 lbs, and my partner in crime Sara has lost 4! That is 11 lbs. lost to help cure SMA! If you would like to sponsor me, please let me know at firstname.lastname@example.org. For those of you who have already pledged, I will be emailing soon to update you!
I would like to take a quick moment to thank Littlest Boutique and Bouquet of Pixels--thank you guys so much for helping cure SMA and SMARD, and helping to save my little boy.
EVERYONE ELSE: ENTER THE GIVEAWAY!! DEADLINE: 10/1 at midnight CST!
Wednesday, September 23, 2009
Bad news: we are not going to be able to get Dakin's flu shot at his pediatrician's office. I was hoping they'd come to the car and stick him, but evidently they're worried he'll die or something. Fair enough, but I refuse to metaphorically choose between getting hit by a semi or a cement truck, soooooooooo...we're going to Dallas to get it done. At Baylor. My continual savior and source of help. Baylor, I hated you for the 7 weeks I spent sleeping in your cold rooms, but I love you now.
Which throws a wrench in RSV shots as well. We were going to get the shots through the pediatrician, but I'd rather get a fork to the eye than chance that. I am thinking I can get them through the pulmonologist (A TWO AND A HALF HOUR DRIVE), so I'm going to try that.
I'm pretty annoyed right now.
Tuesday, September 22, 2009
I told them he had already had every cardiac test under the sun, but they went ahead with the recommendation anyhow...Gah. I don't know what to do. Do I risk taking him to the appointment or risk them not having a cardiac baseline? At this point, since Dakin's tachycardia is extremely well controlled on Atenolol, I am thinking he's ok to put this off for a while, but I just don't know.
Anyway. I called the neurology nurse to ask what to do. What would you do? I asked the cardiac people about coming right in and not having to wait in the waiting room, and they told me all they could guarantee for a vent kid was less than 10 minutes. Seriously? I hate to act like queen of the planet, but when your child's life literally depends on keeping him away from sickness, you have to be demanding.
Friday, September 18, 2009
Tuesday, September 15, 2009
I have also read many of them. I hope no one is angry about that...but with so many adorable pictures, I couldn't resist. I wanted to know these people, people whom I greatly admire and share a large amount of sorrow with. Sorrow, I have found, is a powerful friendship-builder.
I have been so touched by these letters...but I am angry too. The more letters I read, the angrier I got. I shouldn't have to be doing this--there should be no SMA. These children should be playing on swings and running in the park. They should be kicking soccer balls and eating ice cream and planning Halloween parties. They should not be struggling just to sit up, or walk. When the disease is so understood, and so close to treatment, why are we wasting money on corrupt organizations and horse contraceptives and bailing out executives that could pay for the UC Irvine stem cell trials with the change in their couches?!?!
I am so angry! Angry at this disease that is taking these children, that took my son's ability to breathe and walk. Angry that instead of playing with friends, he is inside away from the germs. Angry that I am watching him with a nervous eye, fearful of any sign of progressing weakness, instead of playing in the autumn leaves with him.
Reading these letters has given me new purpose. I will not take my last breath until this disease is eradicated. Gone. Destroyed, a memory only.
Forgive me the vent. I'm just really upset.
Saturday, September 12, 2009
13. He's started using the kisses to ask for things...like he's trying to cute himself into getting what he wants.
15. Dakin likes to sleep almost all the way on his tummy.
16. As I've said before, he is stubborn as the day is long, but has a very sweet side too.
17. He has a smile that, if the power were harnessed, would light every home in Texas for a decade.
18. He's learned he can be off the ventilator for a second or two and he's ok. He doesn't freak out on disconnection anymore.
21. One of the funniest things he does is the 'no' he gives me by shaking his head when he first wakes up from a nap. The look on his face is priceless...I should try to get it on camera.
22. Though he's all toddler-independent man now, he will still occasionally snuggle with me. :)
23. He is very easily entertained. He is happier with a gauze wrapper (I know...) than he is with any of his toys.
Wednesday, September 9, 2009
Giveaway Rules: you get one entry each:
1. Post about Pound Out SMA/SMARD on your blog, then come back here and let me know!
2. Post about Pound Out SMA/SMARD on Facebook, and let me know here.
For those who have already entered, you don't need to do it again. The cutoff for the giveaway is now October 1st!