Why I Love Handy Manny

Yep, I love that show. And I'll tell you why. Because in every single episode, they make a point of showing the people in Sheetrock Hills who are wheelchair bound--there are 2: Sam, the owner of the bike shop, and another little boy who is in a chair and who likes to play basketball. They are shown rolling through town, and there is acutally an episode about each of them.

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.

Quiet Night

Hi all. Thank you for your well wishes!

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.

Oxygen

I'm not sure what's going on with Pumpkin Boy. He's had a rough couple of nights--he's been on 02, which is incredibly unusual for him. He's not running a fever and I'm not suctioning gross green or yuck-o secretions, so I'm hoping it's just the weather and off schedule this week...I'm not horribly worried, since he's only on about a half liter of 02 and he's staying around 92-94, but we will see.

We also don't have a nurse tonight. Gonna be another long night. Prayers please.

Bouquet of Pixels--New Pound Out SMA/SMARD Sponsor!

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 poundoutsma@gmail.com. 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!

Quandary #2

Good news and bad news. Good news first: OK, so the neurologist said we can push back the cardiology appointment. YAY. So that's the good news.

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.

Quandary

So I'm not sure what to do...we have cancelled all our 'non-essential' appointments for this winter, except for an upcoming cardiology appointment. I have been on the fence about this one, because we already have a cardiac baseline for Dakin, and save for a little tachycardia, he's fine. This all came about because a little SMARD friend of ours went into unexplained cardiac arrest--I nervously called up the neurologist, who assured me that that type of this is not at all normal for SMARD, but she wanted a cardiac baseline anyway.

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.

AGH!

Photo Friday--Superman

Stupid flu. We are cancelling Dakin's birthday party--it's just too widespread.

This picture is kind of fun, even though Dakin has a weird face in it. This fabric, if you look closely, has a Superman pattern on it. I bought it before Dakin was born, thinking I would make a baby blanket out of it. Well, that attempt went up in flames due to the fact I just can't sew. I was going to take the project up again after he was born, but then my whole life went a little crazy.

Enter my friend Liz from church. She is a sewing maven, and graciously taught me how to do blankets on our day nurse's sewing machine. So I finally got to finish Dakin's Superman blanket.

See? I knew he was a superman before he was even born!

It has been my great privilege the last few weeks to be working on our Oprah project. The response was amazing--we got over 100 letters from about 45 different SMA-affected families. It has been an honor to receive these letters and glance through them to catch the kiddo's name to keep track of who we received letters from.

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.

25 Random Things About Dakin

Dakin has changed so much in the last few months, largely I feel due to the fact we have gotten him a custom stroller and have been able to take him out on walks. All our therapists tell us that once a child starts moving through space then some pretty spectacular development occurs. We've definitely seen this with him--not that he was ever cognitively not on-track, but he has really blossomed with the advantage of movement.

With all these changes, I thought I'd do a Dakin 101 write up, for my own memories and so that you all could get to know him better. I'm basing it on the "25 Random Things" meme floating around the internet.

1. Dakin loves books. LOVES books. He would rather read than do almost anything else.

2. His favorite books (at the moment) are 1. The Monster at the End of this Book, 2. Good Night Sweet Butterflies, 3. There's a Wocket in My Pocket, and 4. The Zoo. I've read The Monster four times already today.

3. Dakin loves rough and tumble playing. It's the boy in him, I guess.

4. He has, in the absence of many words just yet, developed a pointing mechanism--he'll widen his eyes, look at the object he wants noticed, and raise his chin in its direction, while making a distinctive 'aaah' sound. Works as well as a finger!

5. Dakin adores being in his stroller. We are trying to get him up in it more in preparation for a power chair and also since developmentally he just needs to be upright as much as possible.

6. He likes seeing dogs. When he does, he makes an 'oof oof' sound. Birds that resemble ducks are 'da da da' and sheep say 'ba'. Any other animal makes one of these three sounds...cats say 'oof oof', etc.

7. He is extremely interestes in motorized vehicles. For all those with wheels he makes a 'brrm brrm' sound (including his stroller) and flying ones are 'ra ra', like Rocket on Little Einsteins.

8. Dakin's favorite thing to see on walks are pump jacks. He will complain if we don't stop and look at each and every one of them (and that's a lot around here) and nearly launched himself out of his seat to see one yesterday.

9. Dakin loves to play with Dada. Mom is a toleration, but Dada means fun.

10. When Dada sneaks in to tickle Dakin, he will always stop right before he touches him, and Dakin will always say 'dada'. Then the tickling commences. It's really cute.

11. Dakin doesn't eat a whole lot of any solid foods, but when he does, he doesn't like sweet things. He does love Cheeto puffs, Cracker Stix and couscous (just imagine the mess...he feeds it to himself lying down and it gets everywhere).

12. Dakin's very kissy. He will randomly blow me kisses.

13. He's started using the kisses to ask for things...like he's trying to cute himself into getting what he wants.

14. When he needs help he will say 'mama'. He had just been screetching, but I couldn't handle it and we got him to start saying mama instead.

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.

19. His favorite TV shows are 1. Little Einsteins, 2. Handy Manny and 3. Toot and Puddle.

20. He enjoys being in his stander. He can go quite a while in it!

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.

24. He insists on having the water running if we're in the kitchen. (Sorry...I have talked to him about wasting water, but he doesn't seem to care).

25. He is joy embodied and the darn happiest kid I have ever seen.

Pound Out SMA/SMARD Announcement and New Giveaway Goodies!!

Hi all! We are thrilled to announce we now have 18 sponsors on board, and a few more who have chosen to lump sum donate. That means if I can get my butt in gear and lose the full 30 lbs. we will raise over 600.00 dollars! YAY everyone!

For those who haven't had a chance to read about Pound Out SMA/SMARD, here's what's going on: we are raising money for Dr. Keirstead's embryonic stem cell program at UC Irvine--a program which has the capacity to CURE Dakin's disease. Dr. Keirstead and his team are preparing for human clinical trials on SMA Type 1 children in early 2010, but need funding to help these trials happen. So we have joined with a number of other SMA families to raise 100,000 dollars. Our part of this will be Pound Out SMA/SMARD, in which I am attempting to lose weight to raise money.

If you'd like to help, you can do so in two ways:

1. You can donate directly any amount to Unite for the Cure, and in the donations box write Pound Out SMA/SMARD or Lovelace family.

2. You can pledge to me 1.00/pound to a total of 30 pounds/30 dollars. Let me know if you'd like this option by responding to this post or emailing me at poundoutsma@gmail.com Pledges will be collected at the end of November.

100% of all donations go to Dr. Keirstead's program.

NOW FOR OUR ANNOUNCEMENT: I'm really excited about this! We have a new giveaway sponsor: Littlest Boutique! Littlest Boutique makes beautiful bows for little girls, as well as fashion accessories for women. Seriously, you need to check Littlest Boutique out--all the items are gorgeous!! The woman who runs it is the wife of a friend, and we are so glad to have them on board! Littlest Boutique is offering a breathtaking set for one winner of our giveaway. Check it out:

I know, right? GORGEOUS!! The giveaway for the hematite, rose quartz and amethyst jewelry is also still going on--as a reminder (and I apologize again for the lousy pics):

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!

Without Further Ado...The ZOO!

We (Dakin, Nurse Jane and Mommy--DaDa had to work) ventured out to Caldwell Zoo in Tyler, TX. This was our last summer hurrah--the last big trip out before flu and cold season hits. With just a handful of people visiting the zoo that day, we had the opportunity to really stop and enjoy all the sights. it was a gorgeous day, perfect for zoo visiting. Dakin really enjoyed looking at all the animals, though he was very interested in the other kids he saw too.

We got to go into the Wild Bird Walkaround, which had hundreds of beautifully, brightly colored little birds. We got a seed stick and showed the birds to Dakin up close. I don't think he knew what to make of them. It was very loud in there, but shockingly clean. We had to Germ-X and Clorox everything when we got out, but it was worth it!

This is where we ate lunch--a beautiful shadedpavilion overlooking the elephants and giraffes. It was so nice there we stayed for over an hour while Dakin ate a cheese stick (a WHOLE cheese stick--this is really an accomplishment!)

We have video on our camera--I don't think I can upload it here, but I will try. One of the videos is Dakin in front of the white tiger enclosure--yikes! This giant tiger was about 2 feet from him, separated only by a pane of glass. Truly frightening. Dakin, of course, didn't bat an eylash.

Of all the wonderful, exotic animals we saw, Dakin's favorite were the ducks (da da da).

I had been planning a trip to the zoo forever, and I am so glad we finally got to take Dakin.

So Thursday we spent about 3 centuries in Dallas at vent clinic. Although we waited forever to see the pulmonologist, we did have a wonderful checkup--Dakin's blood gases were perfect, as was his chest x-ray. He gained EIGHT grams a day--ha. Take that, nutritionist. Told you he could do it. With that eight grams, he put on 1.7 pounds and nearly an inch.

We also had a lovely discussion with our outpatient case manager. We just love her--when she talks, things get done. We had some things to arrange, including: 1. getting a sonic vest for Dakin--he is so over the chest percussions we have to do for CPT and I think he'll enjoy the vest. 2. We are having AMBU bag issues (the new one we got sucks, and that is not a good thing, as we frequently use the AMBU to keep Dakin clear of chest secretions). So she's going to get us a new one! 3. She is putting in a prescription for lithuim ion batteries!!! This is awesome, because the backup battery for Dakin's vent is a huge, heavy car battery. The lithiums are light and small. We have been trying to get some since I don't know when...I should have just asked her in the first place.

They are also going to fight valiantly for us to get Synagis shots for Dakin this winter. Synagis helps prevent RSV, a virus which would be potentially fatal for Dakin. Once the kiddos are 2 they usually can't get it, but his birthday isn't until the end of October, so we may be able to swing it one more winter. Keep your fingers crossed. All in all, an extremely long day, but worth it. I just love it when they say he looks great...ah...blowing sunshine at me. Sigh...LOVE good reports.

August '09 Declared SMA Month in Texas

Look what we got in the mail today:

If you can't tell from the awful scan job (my scanner is horrid), it's a declaration from Texas Governor Rick Perry naming August as SMA Month! We had contacted Governor Perry's office at the beginning of August, but didn't really expect to get a response (I'm sure they get declaration requests all the time), but we are thrilled to see such a powerful figure take an interest in SMA! Thanks, Governor Perry!

Pound Out SMA/SMARD and GIVEAWAY

I posted recently about the embryonic stem cell trials at UC Irvine. I am becoming more and more convinced that stem cell is going to be the only viable option for a treatment or cure for Dakin--what they do with these cells is astonishing. Basically, they go in and repair destroyed nerves. No one (NO ONE!!) in the US is researching SMARD, and in absence of any other treatment or cure for Dakin, this is the star we are hitching our wagon to. In light of this, I am announcing:

POUND OUT SMA/SMARD

For the next three months, I will be actively attempting to lose weight for Dr. Keirstead's stem cell trials. This is a fundraiser, so I am asking that any and all capable of pledging to do so. You can do so in one of two ways:

1. Pledge to donate one dollar per pound that I lose, to a limit of 30 pounds/30 dollars (times are tough, I know!!!) At the end of November pledgers will be contacted with my final total, again, limiting to 30.00. You can contact me to pledge at poundoutsma@gmail.com

2. Donate a lump sum of whatever amount you would like right now. You can donate by credit card or personal check. For details, please check out Unite For the Cure's donation page. Please know that ONE HUNDRED percent of your donation will go to UC Irvine's Stem Cell program.

I am also looking for teammates, so if you're interested in raising money and losing weight, contact me!

Now for the fun stuff. I am hosting a giveaway to help raise awareness of Pound Out SMA/SMARD and Unite for the Cure. I have been making jewelry for almost three years, and frequently give it as gifts, so I thought I'd make up some earrings to give away. The first pair is hematite, the second rose quartz, and the third design is similar to the first, though using rose quartz and amethyst. My camera is awful, so please excuse my pics!!

How you can win--1 entry each:

1. Post about "Pound Out" SMA/SMARD and Unite for the Cure on your own blog, and post the link to me here.

2. Post about "Pound Out" SMA/SMARD and Unite for the Cure on Facebook and leave me the link.

3. Tweet about "Pound Out" SMA/SMARD and leave me the link.

Giveaway will be closed 9/15 at midnight, CST.

Thanks guys. Come on! Help a fat girl help her son to breathe without a machine!! Let's cure these awful diseases once and for all!