Saturday, May 30, 2009

New Therapy

Outside therapy (now that it's warm enough to go out)! This is, in fact, therapy for both Dakin and Mommy. Our new day nurse loves to walk, and she has dragged us all over the neighborhood exploring. (I had no idea the streets all interconnect!) We have gotten to see animals, flowers, sunshine, cars--things Dakin doesn't get to experience in his little universe contained in our living room. He loves especially looking at the flowers--there are so many wildflowers in the area and he likes to bring them home for Daddy.

It's great exercise too...it's quite hilly around here and we've been putting in hour long walks. Good stuff.

Wednesday, May 27, 2009

Wordful Wednesday

Dakin had a lot of visitors on Memorial Day! Gramma, PaPa, Uncle Brian and Aunt Carrie all came to visit. It was an especially special visit since Dakin hasn't seen Aunt Carrie in nearly a year, and she came a long way to see him! They had a lot of fun playing once Dakin got over his inital apprehension.
And this is Aunt Carrie's new tattoo in honor of Dakin--a beautiful purple butterfly!

It was a wonderful visit. We hope we get to see her and everyone else again soon!

Monday, May 25, 2009

Internet Issues

Sorry for not posting. Our internet has once again showed the ugly side of its personality and has been completely non-functional the last 2 days--I'm posting quickly just in case it dies again.

All is well. We had no night nursing this weekend--our poor nurse is sick! But we did manage to get to church and Dakin did an amazing job of entertaining himself while I taught the third hour. He's such a good boy.

Anyhow. Hope everyone is well and Happy Memorial Day!

Monday, May 18, 2009

Speech Re-eval

It's that time again...Dakin had his 6 month reevaluation for Speech Therapy. The long and short of it is that he's doing great! He's behind a little on vocal language--then again, he didn't talk for two months post-trach and since he shouldn't be talking at all with it, we're cutting him some slack. He is ahead on communicative language, though...he can identify body parts, which is evidently a 20-month skill. So hooray for that!
In other news, he has just been cute beyond belief lately. Not that he wasn't before, but he's just really hamming it up lately. Tonight before going to sleep he was in gales of laughter at a silly sound I was making, wiggling his whole cute self. I wish I had it on tape. Here he is with his permanent stroller and the bucket garden!

Friday, May 15, 2009

I Am A Thief

Yep, a no-good thief. I am stealing Tara's post from Brynlee's Battle With SMA for two reasons: 1. I never had a good idea that wasn't someone else's good idea first, and 2. because as I read this I felt it truly summed up our road with Dakin. Sent with love to all the members of the sorority:

Thoughts of a Mom:

Many of you I have never even met face to face, but I've searched youout every day.
I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you.
You are well worn.
You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with your very heartand soul.
You are compassionate beyond the expectations of this world.
You are my "sisters."Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority.
We are special.
Just like any other sorority, we were chosen to be members.Some of us were invited to join immediately, some not for months or even years.
Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.
All of us have one thing in common.
One day things were fine. We were pregnant or we had just given birth or we were nursing ournewborn or we were playing with our toddler. Yes, one minute everything was fine.
Then, whether it happened in an instant, as it often does, or over thecourse of a few weeks or months, our entire lives changed. Something wasn't quite right.
Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children'sspecial needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in ourshoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find.
We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the"treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.
Without formal education, we could become board certified in neurology,endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive and to flourish.
We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us online. We have tolerated inane suggestions and home remedies fromwell-meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother."We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays.We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween and we have found ways to help our deaf children form the words, "trick or treat."We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for therest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy.
We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds.
We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes.
We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

By Maureen K. Higgins
(It didn't copy over well, so I added the spacings--I'm not sure where they were originally, my apologies).

Wednesday, May 13, 2009

Wordful Wednesday--The Swing

When I was pregnant with Dakin, I purchased a Fisher Price Papasan swing for him. While researching swings, I had fallen in love with its beautiful canopy and projected stars and knew this was the one I wanted for him. We put him in it at about 4 days old...and he hated it. He wouldn't stay in it for more than a few minutes. It saddened me that he wasn't enchanted with my special swing as I was. So it sat in our living room until 'the crash', and while I was in the hospital with him it was moved to our room and left to gather dust.



Until now! We stuck him in it yesterday and he LOVES it. He was so relaxed in it, as you can see in the video. I should have thought of it before, since he loves movement so much, but when we got home from the hospital post-'crash' I didn't think he could use it because of the vent. Fortunately, the weight limit is 25 lbs., and we still have a ways to go before then. He just hangs out of it and bounces it with his legs.


As he swung in it for a half hour today, gazing up at the soft purple stars projected from it, I was so happy that he finally got to enjoy it as I hoped he would.

OK, so here he doesn't look like he hates it, but he did. Trust me. Dakin at 4 days or so old.


video

And here's the boy now. See how big he is??

Tuesday, May 12, 2009

Speak Now for Kids.org

Hi all! You may have been by Praying for Parker before--if you have, you know Parker is a darling boy. His mom Tammy posted the following today--I felt I needed to post it since we have a lot of friends dealing with insurance issues in caring for their sweet little ones. Please take a moment to read this and go to the site if you can help!!


Anyone who knows me understands that I am passionate about Childrens Health Care.
Health care for ALL children.
Regardless of genetic make-up.
I was asked to sit in on a conference call discussing the need for the voice of ALL children to be heard as President Obama sets out to reform health care.
And being the advocate ( and sometimes pain in the butt) that I am, I asked the tough questions. The ones that spoke directly to children with special needs.
Cause, if you remember, Parker’s Mama……..she wears army boots. And will fight to keep her son alive.
But should it really be such a fight? I mean really? The specialist says your kid needs a certain vent to keep him alive, he should get that vent, no?
I was beyond impressed with the mission of Speak Now For Kids.org. They get it. All on their own. Without the usual whack up side the head with a two by four necessary to get the attention of most insurance companies.
Speak Now For Kids.org wants to make sure that if any overhauling is going on with health care that the voices of children, ALL OF OUR CHILDREN are heard.
Yeah. I’ll give you a moment to pick yourselves off the floor as you process that last sentence.
You can go to Speak Now For Kids.org and tell your story, through words or video. Maybe it will be YOUR story that strikes a cord with the powers that be in making health care for children affordable.
Cause you never know when it just might your kid that needs a certain vent, and your insurance turns you down.

Sunday, May 10, 2009

A Silly Happy Mother's Day from Dakin

Well, this video was intended to be a nice Mother's Day thing for Dakin's grandmas, but he had other plans. He's so ornery. But we love him anyhow. Happy Mother's Day!


video

Friday, May 8, 2009

New Equipment and Plant Update

We finally got a stander! We chose the red and blue, of course, for Superman colors. He seemed to enjoy it--he stayed in it for 20 minutes the first time.

And here's Dakin in his new bath chair--yellow, to round out the Superman theme.

And here's Dakin's zinnia--just one week of growth!

Wednesday, May 6, 2009

I Have a Headache

Guess what I watched 30,000 times today?



Yep. Dakin's back to being stubborn about eating, and guess what he'll eat to? That's right. This commercial. It played during the news this morning and I had to keep rewinding it so he would drink some more--he took a half an ounce each time it was on. Fortunately, I had the foresight to record it for tonight...he ate half a YoBaby with it on. Bless you, FreeCreditReport. And this is not the first time they have saved me--last year at this time it was the one with the bike.

Now the song will haunt me in my dreams. The things we do for our kids, eh?

Sunday, May 3, 2009

A First

We had to post this: for the very first time, EVER (even pre-"crash"), Dakin ate all the food volume he needed to in his waking hours. Yeah. He crammed down 25.5 ounces today while awake. I'm shocked. Of course, he'll take some more tonight, since he always does when he's asleep. Neener-neener, doctors.
I also have a confession to make: I cut Dakin's hair for the first time with electric clippers, and on Daddy's recommendation put a #3 on to do so with. Not a good idea. As you can see, his beautiful hair is gone. Fortunately, being his father's son, it will no doubt be all back with more by the end of the week. Sorry about the blurry image--he wouldn't quit moving.

Friday, May 1, 2009

Gardening


We are trying our hand at container gardening this year. We have some herbs and peppers, and a flower--a purple zinnia--for Dakin. We're hoping it works out, as the last time we tried container gardening it was a miserable failure!


The zinnia package says they are guaranteed to grow. We'll see. Dakin's glasses were slipping at this point.