Tuesday, December 30, 2008

Potato Soup and the Wagon

We forgot to mention the other day that Dakin also got a wagon for Christmas! We had a hard time finding one that would be appropriate, since we needed a sturdy metal one with wooden sides. We wanted to be able to take him out on walks, since we have no idea when we'll be getting his specialized stroller and he can't sit up in his regular one. So this one we found at a farm supply store and it's perfect! It fits him and his Bumbo chair, his ventilator, his suctioner and his emergency bag so we don't have to carry anything at all, which is a nice change for us.

We got to take it out for a spin yesterday. He seemed to really enjoy himself looking at everything. We try to make the most of these outings since he barely ever gets to see more than our living room.

Dakin had a big day yesterday--a walk, Physical Therapy and eating Mommy's potato soup. PT didn't go great great, since he's having a harder time now holding up his head unsupported in some fashion. We're not sure why this is--it's either muscle loss or the fact his noggin has gotten so big in the last little while, along with his spine growing a bunch really quickly. We're hoping that his muscles just need a little time to catch up. He's pretty much totally lost the ability to sit unsupported, but when you watch him it's almost like his head is just weighing him down. I guess we'll see. He stood up against the exercise ball for PT, though, which was good. We wanted to post some of the potato soup pictures, since they made us giggle and thought they might give a good laugh to everyone. He managed to squirm his way down from my lap, so that's why the pictures are upside down. Enjoy!

Saturday, December 27, 2008

Yay Christmas!

Mommy and Daddy would love to put up some pictures, but for some silly reason Mommy only took a few...no idea why. But Dakin enjoyed his second Christmas very much. He made off like a bandit with tons and tons of loot. He got a Star Turtle (which Mommy is very excited about since she has wanted it for him since she was pregnant) which projects constellations on the ceiling in blue, amber or green. He's now working on saying star (which comes out as "tar") and seems to enjoy looking at them. He also got an Elmo Live and a TMX Cookie Monster, both of which he is a little wary of, like he doesn't quite trust them. His library was vastly expanded, thank goodness, because another reading of One Fish Two Fish might have finished Mommy off for good. He also got some balls to play with, some beautiful ornaments, finger puppets, a feeding set, an outfit and a Cookie Monster clock. Lastly, he got a Star Stacker and a mobile of the solar system. Of course, however, his favorite part of the whole thing was the wrapping paper, which he thoroughly enjoyed kicking around. It was a great Christmas and we are hoping for many many more!

Tuesday, December 23, 2008

First haircut and Santaland!

Before (shaggy head)
After (you can't see a great difference in the pics, but trust me, there is one!)

Well, Dakin's daddy had been bugging Mommy about getting Dakin's hair cut for some time--he was growing wings. Mommy finally acquiesced and called over a good friend to do it for us (we were afraid to take him to a kiddie cut place where RSV, Asian bird flu, the plague and who knows what else is dwelling on every surface). Mommy was a little teary while it was being done, but he looks great, and so much like a little boy now instead of a baby. He didn't care for it too much, but took it like a man.

Last night we had the amazing opportunity to go to the Santaland lights near Lindale, TX--a huge drive-through Christmas light display. We packed Dakin and all his stuff up and drove about 45 minutes to get there. We were a little nervous that there would be a long wait (which in the car isn't good with "normal" children, much less one on a ventilator) but the line moved steadily and we drove through a beautiful wooded area filled with Christmas lights. On the way in there's music synchronized with moving lights (which was Daddy's favorite part) and Dakin enjoyed that. While in there, Dakin just stared, totally engrossed in the spectacle. It was a truly special activity that we are so glad that we got to share with him.

Wednesday, December 17, 2008

Thank you B4SMA!

Dakin got a BEAUTIFUL blanket from Blankets For Spinal Muscular Atrophy (B4SMA). B4SMA was started by MJ--a wonderful woman who has SMA Type 1. B4SMA has already, in just a little over 4 .5 years, sent 623 blanket hugs to SMA afflicted families! Check out her site here. Dakin's arrived in the mail on Monday with 2 little extra surprises--a football and a lizard stuffed toy.
It's not the greatest picture of this blanket, so I'll describe it--it's bright green flannel with an adorable monster league soccer print on it, and bright orange flannel on the back. We thought it was particularly appropriate since we decided that Dakin's sport (if he's so inclined) is going to be power soccer (more on that later). Thank you so much, MJ, Brenda, and B4SMA! We love it and will treasure it always!

Saturday, December 13, 2008

Santa Visit!

Dakin got to see Santa on Thursday--it was a wonderful visit that we had been planning for a few weeks now. About 3 or so weeks ago, I stopped by the mall to talk to the "elves" about Dakin's situation to see what we could do so he could see Santa. The "elf" was wonderful--she gave me her personal cell phone number so we could call and set up a specific day and time. She also arranged for us to "sanitize" the Santa space--we got to Lysol the whole area and even poor Santa...They got there early to give us plenty of time and to ensure that we were first to help control germ exposure. They were so kind and understanding of our situation. We are truly grateful that there are people out there willing to help us do something as simple as seeing Santa.
Dakin really enjoyed the trip--after, we got to walk around the mall. He just stared at everything. It would have been perfect if Mommy hadn't forgotten the electrical plugs for the equipment...we're so lucky Dakin didn't need to be suctioned more than he did. When we travel anywhere with Dakin we have to have at least two people--one to drive, and one to ride in the back with him in case there's a problem. We have to take his ventilator (which by itself weighs 20 lbs., so with him it's the equivalent of carrying a second grader...) his suctioner, emergency bag (which includes his backup and stepdown trachs), AMBU bag, and all that on top of a regular diaper bag. It's quite a bit. We've pretty much gotten it down to a science now, though.
Anyway, it was a wonderful trip and a testament to the fact that there are still decent and good people out there. This trip made my Christmas.

Thursday, December 11, 2008

Treatment and Please Sign the Petition!!

Some people have asked if SMARD-1 is treatable. At the moment, no. There is nothing we can do for Dakin, though researchers are investigating possibilities. Just recently in Italy a successful stem cell transplant was done on mice with Dakin's condition, and there is a drug in the testing stage for Duchenne Muscular Dystrophy that may be applicable to SMA and so possibly Dakin's condition as well.

Right now, though, there is a movement to get the SMA Treatment Acceleration Act through Congress. A wonderful family with a beautiful daughter who has Type-1 SMA has started a petition to get the act moving--you can read about her and sign the petition here, so please take a moment to do so and help not only Dakin but the thousands of children suffering with SMA, DMD, Tay-Sachs and so many other debilitating diseases. And please spread the word! The goal is 50,000 signatures. Any research/treatment from this Act can potentially help quite a few disorders, all neuromuscular like Dakin's, so if we can get this passed it could help him. Please also take a moment to see if your legislators are on board with the act (you can check it here ) and print letters, or email them to get their attention. Thanks!!!!!

Tuesday, December 9, 2008

Welcome to our story!

Hi! This is our son Dakin. Dakin has a rare neuromuscular disease called Spinal Muscular Atrophy with Respiratory Distress. He was born with no problems and we had no indication of his disease until he was 3 months old, when one day (literally one day) he couldn't breathe anymore. Fortunately we were at the doctor's office when it all went down. We were lifeflighted to Dallas where we spent 2.5 months in the hospital. While there, Dakin was trached (given a tracheostomy) and put on a ventilator, sent home and told that he would "grow out of it," whatever "it" was (no one out of the millions of doctors he had seen had any idea what was going on with him). Well, we had the good fortune to fall in with Dakin's neurologist, who recognized it for SMARD-1. His blood was taken and sent to England for genetic testing. Three months later we received our answer that there was in fact a mutation on one of Dakin's genes and he was officially diagnosed with SMARD at the beginning of October (six months after coming home from the hospital). SMARD is untreatable, incurable and will likely leave Dakin on a ventilator for the rest of his life, but the good news is that that will probably be a long time, unless he gets some horrid respiratory infection, and so we're very careful about germ exposure. He has some muscle weakness, cannot walk or sit unsupported, but eats and talks and plays like other children.

We try to keep our home life as normal as possible, as normal as it can be with having a child on a ventilator. We have skilled nursing at our home almost all the time, as his care is more than one person can do. We have been blessed with amazing nurses who love Dakin. Dakin has breathing treatments every six hours and needs to be suctioned through his trach whenever he can't get his lung secretions out on his own (which is most of the time). He has Speech Therapy (to help with eating) and Occupational and Physical Therapy, all twice a week. We are constantly doing some form of therapy with him in an effort to help him build strength as much as possible. All in all, he is as healthy as he can be, and so so much happier than he should be considering everything he goes through. Dakin smiles almost constantly, is cognitively normal and on track mentally in his development. He is extremely interactive and loves reading and music.

We, as we said in the header, hope that as you follow his story that you can find some joy from him. We feel that since his condition is so rare, he was meant to be the "city that is set on a hill that cannot be hid." Welcome!!!