Wednesday, April 29, 2009
All joking aside, though, we are truly sorry for those who have been affected by this illness, especially the family of the little one who passed yesterday. Everyone stay healthy, ok?
Sunday, April 26, 2009
Here are some of our favorites (though it's hard to choose!!!). We'll save more for later so you'll come back. You know you want to see more.
This one is vintage Dakin.
This one I just love love love!!!
Friday, April 24, 2009
We also got the rest of Dakin's genetic testing back today--it took forever. We sent the blood sample April 4th of 2008!! Oh well. That's what you get when you have a random disorder. Anyway, it would seem that Dakin does in fact have 2 mutated copies of his IGHMPB2 gene, but the mutations are heterozygous--the first one was a substitution of an amino acid, and the second was a gross deletion of some exons. Our Geneticist says this could mean we are both SMARD carriers, but with the large deletions it could possibly be a first generation mutation, which would mean only one of us is a carrier. We have to get our testing done now to see what the whole story is, but it won't take nearly as long. 2-3 weeks.
Lastly, and sadly, we were heartbroken to learn that little Beau (one of Dakin's SMA friends) finished his battle with SMA yesterday. Our prayers are with his family. Please, if you have not taken a moment to sign the petition at www.petitiontocuresma.com, please do so for Beau and his mourning family. We must must must beat this disease.
You will not be forgotten, sweet boy.
Thursday, April 23, 2009
Tonight he started running quite a high fever for him (101.5). We discovered that he is currently pushing two teeth, which would account for the fever, but he just didn't look ok, you know? So we're keeping an eye on him for tonight and we are hoping that this doesn't result in a trip to Children's. Keep your fingers crossed.
Saturday, April 18, 2009
So here we go! Enjoy! This first one is Dakin enjoying being a boy. Sorry about the camera shaking--I was laughing so hard I couldn't help myself.
Tuesday, April 14, 2009
Sunday, April 12, 2009
Friday, April 10, 2009
Thursday, April 9, 2009
- When we got home, Dakin was on breathing treatments every 4 hours, now we're every 8.
- Dakin had a feeding tube, and now it's out (at least for the moment....)
- He was almost 13 lbs on release, now he's 22.
- I'm not sure how much he has grown, but it seems at least a foot and a half...
- When we got home, we had to wear a pulse oximeter all the time. Now, it's just when he sleeps.
- Vent settings were at a breathing rate of 12, PEEP of 7, pressure control of 20, and pressure support of 18(I think). Now he's only on a rate while asleep, his PEEP is at 5, PC is off except when he's asleep, and his PS is at 13!!
Now, we have lost some ground--he can't sit up independently anymore and he has muscle weakness, BUT I think we should focus on the positive. Respiratorily, he is doing amazingly. He is getting stronger with breathing every day.
Oh, this is also our day to celebrate an entire year of being hospitalization free!! (Though I have to admit he was in for a few days for an abcess, but here in East Texas they freak out when they see a baby on a ventilator, so they hospitalized him. But it doesn't count!)
We love you so much, Dakin! We are hoping for another whole year hospital free!!
Monday, April 6, 2009
He did well with it today--didn't seem lethargic or crabby. Tonight, however, he is not keeping his oxygen saturation up at the beautiful 98-100% where he usually is--he's sitting 96-ish. So I'm running a Xopenex treatment in the hopes of bringing his sats up. We'll have to see. It usually takes him a few days to adjust.
He is doing better with eating (I'm not sure if I blogged about the hunger strike that he's had going on: he decided it was way more fun to spit his food out than to swallow it), and by better I mean that he's at least taking solids again. We had pulled them and let him concentrate on the liquids since he gets his caloric necessities from his milk. But he happily--and without a fight--ate a cup of pudding for dinner. Hurrah. I'm tired.
Friday, April 3, 2009
Thursday, April 2, 2009
Anyway. Thanks for the well wishes! They worked!!