Dakin's Year in Review

ThenNow

Boy, what a year it has been! So much has happened for Dakin: friends made, interests discovered, milestones achieved and disease defied. I thought it might be fun to recap:

January: Dakin's feeding tube was pulled. YAY! It has stayed out the entire year. Dakin continues to eat more and more, and gain weight. We have fought the feeding battle now for nearly two years with him, and I finally feel that we have been successful. It has been worth every single minute. We also had fun exploring the neighborhood in his wagon!

February: Dakin got a custom stroller to try out, which pretty much equaled freedom. This is when he really started blossoming--the exposure to a world outside of our living room has made a huge difference in his life, and continues to.

March: We had the wonderful experience of participating in the Littlest Heroes project. Brandi, our photographer, came to our home and took beautiful pictures of Dakin. Thanks again, Brandi!!

April: April was kind of a difficult month. With the emergence of the Swine Flu, what should have been a month of more relaxed germ protocols became a month of fear for me. Not a good month. We did, however, celebrate one whole year out of the hospital!

May: In May we gardened and got a stander. We also, in an attempt to help Dakin eat, listened to the FreeCreditReport.com commercials eight. hundred. thousand. times. That was a long month...but we also got to go outside!!

June: June was a busy month! We launched our East Texas signature drive for the Petition to Cure SMA. Dakin was featured in a newspaper story and on the local news. And it was hot. Really really hot.

July: Still hot. We met with our Congressman at the beginning of the month to discuss the SMA Treatment Acceleration Act. We also had the pleasure of meeting Gwendolyn's family in person as they rolled through East Texas on their Sponsor-a-Mile to End SMA. We saw Dr. Iannaccone (neurologist) and Dakin got to eat at a restaurant for the third time in his life. Did I mention it was hot?

August: SMA Awareness Month found us very busy. Upon us contacting him, Governor Rick Perry declared August 09 as SMA Awareness Month in Texas. (It was a little late, but better late than never...) We joined up with Unite for the Cure, and Dakin got to go to the swings and the zoo for the first time. At this point the heat had reached biblical proportions.

September: We launched PoundOut SMA/SMARD to help fundraise for Unite for the Cure. We also went on lockdown for flu season (early, boo). We also helped with an attempt to get Oprah to do a show on SMA. Busy month, that one.

October: October was amazing. Dakin got to make cookies, go to the pumpkin patch, and take his first step. He also celebrated his second birthday. I am full of gratitude for that month...it was a blessing.

November: Pretty slow. We had a wonderful month searching for the perfect autumn leaves and enjoyed a quiet Thanksgiving.

December: Busy! We got to see Santa and participate in our Nativity play. We had a joyful Christmas as well.

2009 was a pretty great year. We are hoping and praying for a good 2010, for us and all of you!! Happy New Year!

Christmas (Finally)

I would have posted this in a more timely manner, but we were experiencing major technical issues in the form of a nasty virus that knocked the computer out. Several hours and a lovely phone conversation with the tech later, we are live once more. Go team.

Christmas was wonderful. Quiet, just like I like it. We even had some snow! Here's our nurse Jane on Christmas Eve with Dakin--it was snowing, though the camera didn't pick it up.

Dakin trying on Mommy's new sunglasses while unwrapping presents.

Dakin got many cool presents--this one is one of them. It's an Old Lady for singing "I Know an Old Lady who Swallowed a Fly," which is, in my opinion, one of the best kids' songs ever. It even came with little stuffed animals that she eats. Awesome! Boy, did this kid make out like a bandit. He got cars, books, clothes, toys, art supplies and his own personal volcano.

After we were done unwrapping we of course had a mountain of paper everywhere. Strangely, Dakin was really subdued until I cleaned it up--then he perked up a lot. Hmm. Creature of habit, this one. He doesn't like unwelcome things in his environment, I guess.

Hope you all had a wonderful Christmas!

Joy to the World

"Thanks be unto God for his unspeakable gift," that Savior who came to make everything--everything--all right. Merry Christmas to everyone, and love from us to you.

Nativity Play/Church Christmas Party

I wrote a few weeks ago about how Dakin's pulmonologist had given us a green light to do some things we hoped to be able to--but didn't expect to be allowed to--do. With the Swine Flu fears I had all but given up hope of seeing Santa this year, but as you saw, we got to. The other thing we got to do was let Dakin participate in our church's Christmas party and Nativity!
From the time she started organizing it, my dear friend Nichole (the same Nichole who sat outside in the 100 degree weather to gather signatures for the SMA Petition) wanted Dakin to participate, if he could. He ended up being a Wise Man, with Dada as a servant to drive him on and off stage. Dakin really enjoyed the entire experience. He didn't get nervous with so many children around, like I thought he might, and the kids are used to him now and give him space. He even had fun at the party portion of it. I have video, but I can't upload it...boo.

And I have to say how wonderful our church family is...to help minimize germ exposure on the potluck, they made us go first...:)

The New Best Thing Ever

Dakin has a new hobby. Yep, he LOVES to color. And by loves, I mean ALL DAY. He would if he could. He lies on his left side and colors with his right hand. He has filled paper after paper of these beautiful scribbles, and gotten them all over himself as well.

It's interesting how this came about--we wanted him to be interested in coloring, but I couldn't get him into it. He just decided one day he wanted to and hasn't quit since.

This was supposed to be a Christmas post, but I can't get my idiot camera to load to the computer. I do have some really wonderful things to post about...maybe soon!

Santaland

One of our favorite Christmas things to do is to go to Santaland, right outside of Lindale, TX. Santaland, in case you missed the post last year, is a huge drive-through light display. As you can see in the pics below, they have a variety of different lit forms--we of course had to take a picture of the butterflies.

Dakin really enjoyed this trip, as he did last year. I love Santaland because it's a 'no strings attached' type of trip--we stay in the car and only have contact with the person who takes our money to enter, so he's not exposed to anyone. And of course, he loves the lights. It was pretty cold out the night we went, so we snugged him up in this carseat and he enjoyed the show.

After, we got some hot chocolate from Starbucks. Great night.

Christmas in the Hair...

You may be wondering what that small white thing is on Dakin's head near his collar. Well, wonder no more: it's a piece of candy cane. I gave him one to suck on the other day, and he must have bitten a piece off, and instead of just chewing and swallowing, out it came. And into the hair it went. Fortunately, I just snipped a little out and we're good to go.

Oy.

Thy Leaves Are So Unchanging

At least this one's are. We went with a fake tree this year, thinking that some allergy issues came up last year with a real one. Well, it seems that Dakin is just going to be junky at this time of year, real tree or not.

I love the symbol of the Christmas tree...in both pagan and Christian traditions it points to immortality. It is especially poignant to me this year: living in a world where children pass--frequently--from diseases for which there is no cure, the assurance of an eternal life is comforting and beautiful. I also love the lights: a light that can never be darkened, even though death may dim it for a time. The tree is a message to me that this life is not the end. And I'm grateful for that.

Anyhoo, here is Dada and Dakin--Dada decorating the tree and Dakin dictating where the ornaments went. He is a benevolent tyrant, at least...I had some pics of me and him, but he kept moving his head and the effect is ghastly, so they're not going on here.

More Christmas fun to come!

PS: Ignore my unmatching furniture.

Santa!

I am constantly amazed and humbled by the lengths to which people will go to help keep Dakin safe and enable him to do things other kids do. For the second year, the Longview Mall has done this for us in regards to taking Santa pictures. Encouraged by their kindness last year, we contacted them to do pictures this year, and they literally bent over backwards for us. They opened a half hour early for us so we would be first, they sanitized the set, and made sure Santa had a freshly dry-cleaned outfit. Of course, they let us Lysol the chair and Santa himself as well, to be on the safe side. My contact at the mall assured me she wanted to do everything she could to make it a perfect experience for us, and it was.

This gentleman has been our Santa now for two Christmases, and he is wonderful--soft-spoken and gentle with Dakin. Dakin took right to him, which was mildly worried about since he's got some stranger anxiety at the moment (too many shots). Anyway, you see the result above.

I wish I could express to people how much small acts of kindness like this mean to us. I can't. There are no words. Just thinking on this experience and the preparations the mall made for it is bringing tears to my eyes. It would be lying to say that being a special-needs parent is easy--it's not. It's hard, every second of every day. Experiences like this, though, make it better. Helps to carry the burden a little. Thanks, Longview Mall and Santa! We will see you next year!

Loooooooooong night

One of the more unpleasant aspects of my life is finding and training new nurses for Dakin.  One of our night nurses left us this week, so we had a new one last night.  Dakin liked her, which says a lot.  However, it was just one of those nights where everything went wrong.  He was satting a little lower than normal (he was about 94%--he's usually 98-100%), so I stuck him on some oxygen, thinking that with the weather change and our trip to Santaland he might have been lower than normal.  His breathing treatment didn't do much to help the sat issue, so he stayed on O2 most of the night.  He's also pushing a molar, so I gave him some Motrin to help with the discomfort.  In addition to his lower sats, the pulseoximeter was not reading correctly (NOWHERE we put it would it read!!!!!!), and the O2 machine decided it didn't want to work either.  So needless to say, I was up all. night. long.  So was Dakin, for that matter...he finally got into a good sleep about 6 am, and we both got to sleep until 10 am.  Thank goodness.  I'm exhausted. 

It's always hard with a new nurse, because she doesn't know how to read him, you know?  I think she was overly worried all night because he makes noises while he sleeps (artificial ventilation+huge leak around his trach = involuntary vocalization as air is pushed through his vocal cords).  He does it all the time, even while sleeping, and it is no cause for concern, but she doesn't know that, so she had me up all night checking on that too.  Sigh.  Thank goodness our other nurse is here tonight and I can sleep.  Three wonderful nights of sleep.  After that, I'm not sure what we'll do...I don't know if the nurse we had last night will work out or not.  Guess we'll see.   

All Aglow

From Vent Clinic! Yep, another marvelous vent clinic trip. As I've said before, I love going to vent clinic because the doctors usually only have good things to say. Today, no exception. Blood gases were marvelous, x-ray marvelous, weight gain not marvelous but sufficient. He gained 4 grams a day--the goal was 5-6, and since they want him on the skinny side anyhow, they were happy.

They also said we could drop his overnight CPT treatment, and...they said we could try some off-the-vent trials. I tried this a few months ago, and the longest he could go was 30 seconds. I would be perfectly happy if he could just go two minutes off the vent--that would be enough to let him run out and get the mail, or look at the sunset, or if we had to transport him quickly in an emergency situation. We'll give it a try...if Dakin doesn't do well, then we won't do it.

Anyhoo, all in all everything was great. Dr. C said he was impressed, which means a lot from a doctor, you know?

AND, we were given the green light to do some pretty exciting (for us anyway) things. More about that later!!

What Kind of Monster

Would do this? Agh! Cookie split from stem to stern!

And Elmo! Who would hurt Elmo?

The answer is ME. Hah! I tore apart an Elmo in order to learn how to switch adapt him, and it WORKED. The hardest part, really, was the soldering, and DaDa taught me how to do it. (Boy, you should see his soldering burn...yee. I couldn't get a clear pic, though.) But I made Elmo work so that all that Dakin has to do is click the happy face button and he will talk.

As for poor Cookie, I am afraid he is beyond my skill level. Gutted for nothing, that one. I contacted LeTourneau University in our area to see if they could help us with modifying toys for Dakin, and they are going to help us--more on that as it gets closer.