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.

Done

With our H1N1 vaccine rounds! We all got them on October 30th, and Dakin got his second one today. Hooray. Too bad the stupid virus is mutating now, so Dakin is in just as much danger as he was before, but oh well.

I did want to take a second and thank our local Department of Health, though. They have been beyond good to us, and have taken us under their wings in helping us get the vaccines. We had actually stayed at the Department of Health one night (special needs shelter) when Hurricane Ike blew through and our power went out--I'm glad we did now, because it gave Dakin a face for them, and they were eager to help him with the shots. They were so wonderful then, and now--they arranged it so we didn't have to go in the building to get the shots, which is something our pediatrician couldn't do.

*Edited to add that evidently the mutated form is reaaaaaaaally hard to spread from person to person and is really only dangerous to people who for some reason might be resistant to tamiflu to begin with. That's what I get for listening with one ear to the news and not two! Thanks, Monica!! I feel better. Maybe we can do that church Nativity after all...

Grateful

Happy Thanksgiving to all! I hope you had a wonderful holiday!

We just stayed home and our night nurse joined us for dinner. It was so nice to just relax and enjoy one another's company.

This year, I am so thankful that Dakin is still with us: breathing, eating and in general thriving--as much as a child with a neuromuscular disease can. I am thankful for his stubborness in the face of his disease. I am thankful that he has miraculously regained the use of his right arm, and is getting better at lifting his left one while sitting. I am thankful he has a group of nurses who not only take amazing care of him, they LOVE him. They are like family to us. I am also thankful for a medical team who is beyond compare.

We asked Dakin what he was thankful for. I scrolled through a list of things that he shook his head 'no' to until we got to his stroller. That's what he's thankful for this year...ah well.

Virtuoso

...in training.

Pound Out SMA/SMARD Finishes!

Hi all! Well, we are nearing the end of November, and so Pound Out SMA/SMARD is officially at an end. I managed to lose, out of my goal of 30 pounds...

10.

Oh well. I did get some weight gone, and my partner did fantabulously, so I don't feel so bad. But it is that time that we must needs gather our pledges. So, if you pledged me 1.00/pound, you can donate your 10.00 at Unite for the Cure, or you can send me a check (email me if you want to go that route).

Now, let me remind you...you can still donate 30.00 even though I'm lame and only lost 10 pounds. Or you can donate 15 dollars. Or 8,000,000 if you like. Every little or big bit helps. Dr. Keirstead's research was recently named by Esquire magazine as one of 6 projects that will change science--and maybe, just maybe, might be able to help Dakin breathe on his own someday. And walk.

Anyway, I will have a final total for you all once the pledges are in! Thanks again for your support!!

HELP! One Last Big Push

We have a window right now to get the SMA Treatment Acceleration Act some attention (and, fingers crossed) passed. PLEASE PLEASE PLEASE, if you have not signed, or anyone in your household has not signed, sign the Petition to Cure SMA. Let's show Congress that we won't allow this disease to take our children any more!!!

Step Right Up

And see the amazing pig-boy!

Yep, that's right, ladies and gentlemen. Right here, we have a phenomenon of the greatest magnitude--once a child, now a pig. How did this amazing transformation occur? Books. That's right, folks, books!

So suffice it to say our new eating system is working well. Dakin put down 30.5 ounces of food while he was awake the other day, and another 10 while sleeping. That was the most so far, but his average has been very high.

Besides the obvious elation over getting to say 'nanny nanny boo boo' to the nutritionist, we are thrilled about this because hopefully next time we go to vent clinic there will be no more inpatient feeding program talk.

In addition, his eating well has fixed another problem. He had been having some pretty regular constipation, but since he upped the table food it has almost ceased to be a problem. I was starting to get worried that the constipation was part of his disorder--intestinal musculature degenerating--but apparently not.

Yay.

So get your tickets now and see the pig-boy. Might be your only opportunity!

Bubble Pics, As Promised

Another great bubble day. Check it out!

Dakin giggling with delight at the popping.

Bubbles

We had the most amazing morning. It was GORGEOUS here--low-ish 70s, bright blue sky. After a morning of housecleaning, we decided to go outside and play with one of Dakin's birthday gifts. It's a magic bubble wand--it blows giant bubbles.

He loved it. He loved watching them go up and up. He loved letting them pop on his face--he got an enormous sunny smile on when that happened. He even said "pop."

It was a quiet and perfect way to spend part of our morning. Wish I had pictures, but I didn't think I could bubble at the same time I was shooting...ah well. We'll get some later. I hope I never forget today.

Ok, you need to read this

I stumbled across this this morning, and I feel the need to share it.this out. It's about a little boy who has been diagnosed with terminal cancer, and his one request is to celebrate Christmas this weekend (he has two weeks left). The blogger this link is from is asking people to send Christmas cards. I'm always hesitant about this kind of thing, but this one I feel is legit--heck, they didn't even ask for the cards, a friend of theirs did. We are mailing ours tomorrow--check out the link. All it will cost you is a stamp and some love.

http://katiesdealblog.blogspot.com/2009/11/30-day-giving-challenge-day-5-i-need.html

*Edited to add: a commenter on this post linked an article to snopes.com, so this is legit.

Cautiously Optimistic...Revisited

If you've been reading this blog for a bit, you may have noticed one or two feeding posts. If you're not familiar with Dakin's history with eating, here's a condensed version: up until about 2 months of age, Dakin ate like a horse. Then the SMARD started kicking in and he ate less and less. At his 'crash', they put a tube down his nose into his stomach to feed him. After he was trached there was never any talk of a permanent feeding tube (which now I realize I was very lucky with--most trached children are automatically g-tubed as a precaution against aspiration). We went home with the nasal feeding tube and attempted to help him eat properly again. That went on for a long time, until this last January, when they said he was eating enough 'real' food to pull the tube. Sometime after that I decided I would change things up and stop the pandering (TV, books, etc.) to get him to eat.

Bad move.

Yeah. He totally shut down except for the liquids. You can't outsmart this kid.

So we have been mostly liquids for many many moons now, but the nutritionist is fussing at me that he needs more variety and needs to be eating off a spoon. (He feeds himself things like cheese, but he takes tiny bites--he's very protective of his airway, thank goodness.) She has suggested the feeding program at Baylor, which for us would be a month long (HELL to the NO) inpatient stay while they attempt to figure out his issue.

She told me that the program focuses on positive reinforcement. They find something that motivates the kiddos to want to eat (I almost laughed out loud at that...boy howdy, he is hard to please). But I thought we'd try something we have done in the past--reading--except change it up a bit. Hitherto we had used more of a negative reinforcement with him (if you don't eat, we won't turn the page)--and in hindsight I should have known that would never work since he is so stubborn.

So we switched to a positive spin on it. We fished out three of his favorite books (you may remember Rainbow Rob) and set down with him and a cup of pudding. We let him know that this was up to him: if he wanted to see the next page, he could take a bite. If not, he didn't have to.

He ate EIGHT ounces of pudding.

Later on, he ate EIGHT ounces of potato soup.

If you don't have your calculator and are as bad at math as I am, that's SIXTEEN ounces of 'real' food. He also put down 4 oz. of carnation, 4 oz of water and 3 oz. of V-8 fusion juice, and will undoubtedly eat more overnight.

So I'm guessing this is working, at least until he checkmates me again. Keep your fingers crossed--he has never eaten that much 'real' food in one day!!

Halloween/Birthday Party

Yesterday was a beautiful day--perfect for a birthday AND a holiday (Mommy's favorite!). Dakin had a great birthday, and so I thought I'd show you how his day went.

No, I don't want to wake up!

Getting dressed in Handy Manny costume! I would also like to point out that he is using both of his arms in this pic--he has regained the ability to bring up his right arm, something we haven't seen him do in over a year!

Breathing treatment (the vest jiggles him, that's why the pic is blurry).After some time in the stander and breakfast, time for up in the 'brrm brrm'--Dakin's favorite thing!Naptime already?See? I told you! Beautiful day. Here's Dakin in full Handy Manny regalia. Here's the cake Mommy slaved over. Yes, it's Rocket from Little Einsteins. (My hands are still partially pink from the food dye!)Playing with new toy from nurse Jane--Dakin hits a button and the tools dance up and down.Later on, after another breathing treatment and more eating, here's Nurse Brenda and Dakin's new Handy Manny book! It has tools to use to help Manny build something...can't remember what now. Night night. Dada usually brings him in.

No trick or treating for us this year--maybe next year. Still, it was a great birthday--he was sung to on multiple occasions and got tons of gifts. Thank you everyone for the birthday wishes!

Happy 2nd Birthday Dakin!!

Two years ago today, Dakin was born.

The first time I saw his face, it was crumpled with rage at being suddenly pulled from his previous environment. I didn't get to hold him right away, but when I finally did, the moment was magical. Like his grandmother did with me, I counted all his fingers and toes. I felt his tiny soft head and looked into his eyes--surprisingly to me, they were not blue, but an ambiguous brown-grey-green.

Though I didn't know it at the time, I was holding one of the most courageous people I have ever known. I had no idea what we would go through together, and how deep of a bond I would develop with him because of it.

Two years ago today, I learned what love is.

Dakin, your dad and I love you very much--SO much. You are joy, you are light and happiness, you are everything that is good in this world. You are our hero and our life. Thank you for teaching us so much about being brave and loving. We love you!!


I wanted to put better music with this montage, but I just can't get it to work. So turn off the cheesy music, and imagine Harry Connick's 'Heavenly', a wonderful version of 'A Little Help From My Friends' and the best and original 'Bridge Over Troubled Water'.

Make photo slide shows at www.OneTrueMedia.com

More on the Pumpkin Theme...The Patch

As you can imagine, accessibility is one of the major issues we have to deal with. It is extremely frustrating to discover that you can't take your child somewhere because of wheelchair inaccessibility. We have, thus far, only met this a few times--and thankfully most people are good about it. I think they can sense I'm going to go nuclear on them if they aren't just as accomodating as they can be...lol. Legally speaking, places of business have to have wheelchair access.


The exception to this is the Pumpkin Patch. Being a seasonal thing, and I'm sure not defined under the Americans with Disabilities Act, there are few 'real' pumpkin patches where we can take Dakin. They are too muddy or you have to ride a truck to access the pumpkins. As the majority of these in our area are on farms, that's us out. So we like to look for alternative patches that could be accessible, namely the churches around here.

Last year we went to a local Baptist church, who had graciously laid pumpkins out around their building and one could take pictures there anytime--these pics are from there.

This year, sadly, they opted not to do it, and so I was thinking we might not get to go when our Speech Therapist told us about a local Church of Christ who has a patch this year. So we gathered Dakin up yesterday morning and took him.

The church was perfect! The pumpkins were laid out in a nice grassy area surrounded by a RAMP! Ha! The weather was so gorgeous--crystal clear, sunny and cool. It was set up so one could come and take pictures whenever, and the lady who was there told us to take a little pumpkin for Dakin. I didn't get much by way of smiles in the pictures, due to the aforementioned sun. It was a ideal experience, and I'm so glad we got to go.

I need to write these churches a letter and let them know how much these simple pumpkin patches means to us. I am going to have to contact the one we went to yesterday anyway...they have a school, and the thought of private school for Dakin had never even occurred to me. (I'll explain why I'm thinking about this now in a later post.)

Dakin's Pumpkin

I love to carve pumpkins. Well, I only like it after they have been cleaned and their insides yummily toasted. After the disgustingness is past, I see carving as a challenge--I like to do complicated patterns. It's fun. Maybe I'm a glutton for punishment.

So yesterday I asked Dakin what kind of pumpkin he wanted--Rocket from Little Einsteins, a car, or a butterfly. He didn't say, so I opted for the butterfly, largely because that's the pattern I could find. I had to freehand it, but I don't think it turned out too badly.

Dakin was not happy while Dada and I took turns cutting the hole in the bottom. Not sure why, he just kept complaining--Dada thinks it's because he doesn't like seeing a fellow Halloween symbol being 'defaced.' Guess these Halloween guys need to stick together. He did enjoy looking at the inside of it...

And then of course my good carvers broke and I had to go at it with my chef's knives...what a mess. But here it is.