Butterflies

Dakin loves butterflies (especially purple ones). He and his night nurse frequently discuss them, and she has evidently showed him how they fly. So the other night I asked him if he would flap his wings like a butterfly, and he did so! He has made this movement quite a bit lately, and we're pretty happy about it because he seems to be moving his right arm a lot more than he has been the last 6 months or so--this last summer he pretty much quit using it. We're hoping he's coming out of that. He doesn't really have too much strength in his hands, though, so that's why he's letting them hang.

Oh, and sorry about the background noise--night nurse was vaccuuming Dakin's room. I didn't think the noise would show up!!

Vent Clinic

Yet another vent clinic under our belts, and we have some good news! (I like going to vent clinic for that very reason--it's always good news and excellents all around...) Dakin's chest x-ray looked 'excellent' as were his blood gases. His weight gain was a little slow, but not enough for the dietician to bug about it. In fact, she said we could just check in with her every month or so instead of every week as we had been doing! YAY! In addition to that, Dr. C (pulmonologist) said that this summer we will be working on doing trach collar trials (where we take him off the ventilators for a little while) and getting him off his diuretics and his heart meds!! Ah, I love vent clinic. All they say is how good he looks. It's always a good visit. Yippee!!

Sillyface

It has been a sorrowful weekend. Two sweet little ones finished their battles with SMA, and another should have celebrated his first birthday. In light of all this, I haven't been feeling much like writing, but I wanted to do something and so I thought a silly picture might cheer us up. I love this picture--it was taken shortly before Dakin "crashed," if I may borrow an expression from Victoria.

There was a really good point to this weekend, though--as many of you already know, President Obama lifted some of the restrictions on stem cell research. I feel he has put some very responsible stipulations on how those stem cells are obtained, and so I am feeling pretty good about it. Hopefully we can get this stuff going and get some positive results for our SMA kiddos. For Dakin's particular type of SMA, they have already done a successful stem cell transplant on a mouse in Italy, (of course, Italy--as far as we are aware no one in the US is researching Dakin's type) so that's a step, anyhow.

Kind of a ramble. Sorry. But enjoy the picture anyway.

Missed Birthdays

As some of you already know, March 7th would have been Owen Shuler's 1st birthday. He passed away from SMA Type 1 at 5 months of age. In memorial and to honor his birthday, a video was created, and his parents asked that it be shared. Here it is. Happy Birthday, little one.

Yikes and Double Yikes

Well, we have been so so so diligent in keeping germs out as much as we can be--kicking nurses out who even have a shade of a sniffle, constant Germ-Xing, etc., etc. But despite our best efforts, Mommy has come down with strep, which is why there has been no updates--sorry. Thankfully it's not a bad case and I've been on antibiotics for 24 hours now (as well as in 'isolation' as much as I can be), so we should be ok. Please keep Dakin in your prayers to not come down with this. We WILL get through cold/flu season! Just 5 or so more weeks till we're in the clear!

Holy Cow

Dakin ate about a 1/4 cup of mac and cheese today for lunch. Not ground up, just straight mac and cheese. I'm shocked. I didn't think he could handle that kind of thing yet, but I am thrilled! Hah, take that, naysaying docs. Nanny-nanny boo boo.

Another Video, Anyone?

This is another bit of silliness from Dakin. I'm not sure what he's trying to do here--he almost looks like he's trying to get up. At any rate, he's silly. Enjoy.